Half the Energy, Twice the Spunk

Bad Week (to put it lightly)

2012-01-15T20:23:00.000-08:00

Well I wrote a 5 page diatribe on the past few weeks and realized it was idiotically long. Here's the Cliffs Notes version:

In November I relapsed, in December I started IVIG and TPN again. Last week my second IVIG infusion caused what we are hoping is Aseptic Meningitis (a very rare side effect - sounds right up my ally) after the "we just want to cover all our bases" Spinal Tap (Holy Hell... "some discomfort" is apparently doctor speak for 'it'll feel like we're cutting you in half with a chain saw - then the real pain will start'). I will never shed the guilt I now have over allowing them to do this to my 13 month old baby without any sedation or pain meds... My heart will always ache when I think of it. Don't allow your child's doctor (or yours) to talk you into an unsedated/unmedicated spinal tap if your child (or you) can tolerate the sedation meds - it takes all of a minute longer and some closer observation for a few hours but it's humane. I HAD sedation and it still cleared my pain scale (this from the girl who watched as her surgeon performed a deep-thigh muscle biopsy!). Barbaric.

But, as it turns out, necessary. The spinal fluid was a nightmare and was full of puss essentially, along with a bunch of other unwanted jumk. (lovely eh? pus-filled spinal fluid - excellent ice breaker).

Within hours I was diagnosed with Meningitis, admitted and the rest snowballed from there. (thankfully the spinal fluid did not have any visible bacteria, and the cultures grew nothing, it is assumed Aseptic Meningitis brought on by IVIG treatment. I'm an awesome date I tell ya.

All immune treatements were stopped until the meningitis started resolving. Thursday I had Plasmaphoresis (google it) and had a severe and terrifying reaction to the treatment... very nearly had a code called on me, spent the next 3 days violently and horrifyingly sick.

It's finally starting to improve, however my gut remains in full revolt. Haven't kept much at all down (including meds - compounding things) and rely on IV everything - fluids, fats, nutritions, antibiotics, antiemetics, narcotics, vitamins/minerals, etc etc - We wont know just how hard a hit my GI system took this go - we always seem a bit further behind after illnesses. Monday's goal will focus on alternatives to IV meds - or getting them covered.

We're working with Palliative Care to come up with an acceptable arrangement that keeps me at home. Hoping for things to improve once we have them on board (This is not Hostice care which focuses on helping people/families who are dying navigate the system in a manner that keeps their priorities on the foerfront; Palliative care is 'comfort care' - they focus on making patients comfortable and coming up with solutions that work for everyone... terminal or life-threatening/life-limiting diseases are all open to Palliative input. I'm hanging my hat on them.

Tomorrow will be a better day. It HAS to be.

Thanks for popping by - Family/friends, feel free to pass this along to others I may have missed!

~K

All is not well.

2011-12-29T21:38:00.001-08:00

I just typed a far far too long and disjointed entry.

To save on time, I will be brief today. Should you want more details on any of it, pleas ask... Questions are always good. Especially when the come from the '12 and under crowd! Either email, or just leave a comment with a ? and I'll explain whatever you want.

GggyjQuestions are totally encouraged, and I'll answer any questions as best I can. Please encourage the kids in the family to express their questions... All in all the questions from kids tend to be the best ones.
;66
Alright... Here's a timeline that will bring us to today:

July - 5 cycles of plasmaphereskis followed by the IV rituximab (chemo drugj) every week for a month.

August - two admissions for uti/kidney infection/urosepsis.

September - inpatient again for urosepsis. At this point I was seeing benefits of the rituximab, and I was eating almost totally by mouth. The tunneled line was pulled before we got word on the cultures.

October was lovely. No TPN, no central line... It was a glorious month!

November was the start of the spiral. By late November I was losing weight , dizzy, my heart was a mess, I wasn't eating and more often than not I felt pretty crappy.

December was spent getting a new central line (I have a port a cath), starting the new drug, and getting a few cycles of IVIG. First cycle landed me inpatient for a weekend due to aseptic meningitis.

This past week has been a bad one. Too many bad days and far too few tolerable ones, never mind 'nice' days.

I chose today to postpone the next IVIG dose, as I've had a very sick week and needed a break.

A huge thank you to everyone, for the moral support, physical supports (my laundry gets taken care of)' and financial supports (6 months of no work after he got let go for missing too msuch work on account of what's going on, combined with the tremendous drop in income when he finally found work that allowed the flexibility we require... Add in the thousands of dollars we pay for insurance, meds, travel, parking, gas money, missed work to care for me on bad days throughout the year... It's been a challenge as the life we had was based on twice the income.
I'm reminding myself that I'm here, at home, with my family and that should be more than enough... But when we are constantly reminded that any attept to get ahead financially is usually tossed out the window (we spent two years pouring money into our adoption account. We managed to save up over four grand. In one swoop it was all gone, between insurance co pays (it's great that my wheelchair is 80% covered but that still leaves nearly a grand from us) and life in general.

Just a grumble... I always knew it was expensive stuff being sick, but I had no idea. At this point we have about $20,000 worth of equipment for Brandon and I waiting to be ordered (power assist wheels for my chair, a new chair for brandon, basic supplies for tube feeding, and a host of smaller things we have on that list) because we don't have the money or time to organize the orders.

Just sharing the realities most families like ours are faced with...

Well enough of me babbling. I'll try harder to update a bit more often.

Please pass this link to anyone else you think might want to stay updated.

K

Hello Out There!

2011-11-29T07:47:00.000-08:00

Wow - I need to do some serious revival work on this blog!! Life is so hectic it's hard to remember to update!

It's been a good few months, and a pretty rough few as well. The boys are at school and loving it, taking the bus like big kids ( **sniff** ). Very healthy and growing like weed. :) Parents often report a bit of a honeymoon from the major mito stuff when kids are about 6 or 7 - the high energy demands of infancy are no longer in place, while there is growth and development happening, it's at a slower pace so it doesn't require as much energy from the body. We have definitely seen that - Between Brandon's feeding tube, and this plateau we are hanging out on at the moment, he's really just thriving. We know the next major hit (often a harder hit than the one children deal with in infancy) is expected to come with puberty, but we're hoping it's not too hard on him.

Dave has settled into his new job and is really enjoying the people there as well as the ability to come home at the end of the day. We're all happy to have him home!

Onto me

It's been a ride.

I'll do the 'nutshell' version just to cover all the bases:

January
Discharged in January '11
PICC infection, line pulled, tunneled line placed, days in the hospital.
Several doses of IV solumedrol, and high-dose prednisone orally.

February
High Dose Prednisone through the month
Noticeable improvement
LOTS of energy, jogging, feeling pretty great.

March
Steroids induced Type II Diabetes
Weight doubled to 165lbs in less than 3 weeks.
Off the steroids and start investigating chemo.

May
Line breaks - HSC repairs it
Severe sepsis blood & line (due to line repair)
Heart/Blood pressure goes down
Motility stops

June
Recovering at Moms
Preparing for Chemo (Rituximab)
Surgery (Vas Cath)
Plasmaphoresis

July
Weekly chemotherapy (rituxan)

August
2 week-long admissions for UTI/kidney/sepsis infection (Urosepsis)
Officially in remission mid August

September
another week-long admission for resistant Urosepsis.
Line pulled, TPN/Fluids stopped.

October
Fungal skin and mouth infections (lots of antibiotics = lots of yeast)
heart/blood pressure deteriorating
GI deteriorating

November
Officially relapsed.
Prepping for a port-a-cath placement, starting fluids and TPN this week or next, and gearing up for some 'real' (nasty) chemotherapy.

Merry Christmas.

We are now looking at a very upside down holiday season once more.
The hope is that we can keep me home for the holidays this year - and with the speed my GI team is arranging stuff I think I might actually manage to stay home.

I'm discouraged, exhausted, scared, angry... the whole gammut. The first 3 relapses and 'starting over' that followed were awful. Now I'm there again, starting from a place where I am sick, weak, nauseas, in pain and a touch emotional and even thinking about the weeks and months that lie ahead leaves me completely befuddled.

I hate this disease - it 'gets better' with treatments just long enough for me to go 'wow! I'm actually better!' then it pulls the rug out from under me. Over and over again.

So yea - I'm totally overwhelmed at the moment. We are working on getting set up with a private nurse so I can stay home through infections when possible. Working on a Port date ( https://www.haemophilia.ie/uploaded/image/Port%20A%20Cath.jpg - this is a diagram of what a port is - if you want more info just google it - it's a central line that lives under my skin and is accessed with small needles daily - the perk is at the end of the day I can remove the needle, and not have anything at all on my skin!

I'm looking forward to being hydrated again - and not waking up miserably sick..

So that's us - I see Oncology on Monday to arrange Chemo and the TPN clinic is working on getting my line and tpn underway.

I'll keep the blog update better as we go.

K

Nuts n Bolts of it all.

2011-06-21T21:54:00.000-07:00

Well my last fatigue driven blog entry was pretty flaky and disjointed, so I figured I'd just give the technical specs of things in this one.

Thursday morning I go to CancerCare for round 2 of the chemo we are attempting to control my immune system with. (and by control I mostly mean 'kick it in the butt so it stops making me sick - but hoping not to kick it so hard that it lets other garbage make me sick - yay tightrope walking).

Basically things went down like this:

March 30th - spent my birthday at CancerCare discussing our options. Options ranged from 'really crappy and scary' to 'even crappier and scarier'. We decided on the blander choice of really crappy and scary - decided to try a 3 month trial of Mycophenelate (MMF - an oral chemotherapy drug - also called CellCept). The upsides - it was oral and could be done at home. The downsides - it was a 'broad immunosuppressant' and would likely wipe out all my immune system. It also was slow - it would be 3 months + before we knew if it was going to work or not.

Most of April ticked by waiting for an appt to see my cardiologist and start the Mycophenalate trial. I was acceptably functional - almost completely NPO (nothing by mouth - no food or drinks) and doing OK on the TPN. The steroids packed a literal 65lbs of fluid on me over the winter, and much of March and April were spent watching that extra weight fall off me - it continues to do so.

May came along and kicked my butt. I can't remember specific dates but I wound up with a broken central line in mid-April sometime - the seal at the tip of the line (the part where the cap 'screws on' to the line) had given way. the nurses cut the line, and repaired it with a new end and basically a bunch of crazy glue. 2 weeks later, I had bloodwork done at the hospital through that line (first time I used that lumen since the repair). 2pm the nurse drew the blood and flushed the line. 7pm I was at home, septic, with a temp of over 105. It was unreal. I spent several days inpatient, on massive antibiotics, the line had to be pulled, placed a PICC line (central line that goes into the upper arm rather than the chest) and just overall got good and freaked at how horribly sick the infection (which was considered 'mild' for the organism they grew - and it was treated very fast... I cannot imagine a 'non-mild' version of this infection... the doc explained that the specific bug I had carried with it a 48-52% mortality rate. Scared me strait.

Fuelled by the terrifying sepsis ordeal and how close I realized I was walking to the edge while depending on TPN daily was a good kick in the butt. I called my oncologist and said I no longer want to trial anything - I want the most agressive, most likely to work treatment they could offer.

Within a week I had a vas cath (IV in the jugular that is the size of an HB pencil - i kid you not) and was starting a 14 day course of plasmapheresis (the treatment where the blood runs through a centrifuge and all my plasma is removed and replaced with donor products... 5 times over 2 weeks). Last Thursday I started my first round of IV chemotherapy drugs. These are the big guns and we are all very hopeful we will find some improvement with them.

So far the chemo is making me profoundly tired (told to expect that) but not horribly 'sick' like I expected, so that is a bonus. I spent the weekend once again shuttling back and forth to the ER for IV antibiotics for what was quickly evolving into a kidney infection - but again we nipped it early and only needed a few days of Rocephin.

My opinion of my local ER has grown immensely - the docs I have seen there lately have been fantastic, and the nurses are beyond awesome.

I have 3 courses of chemo left, and then we wait.

We are all hopeful it will work.

If it doesn't, we have other options... bigger, scarier and more sickening types of chemo, or (last resort) plasmapheresis forever (this poses serious and unique access issues - a small central line in the chest or arm is fine long term - a vas cath is massive, and has always led to signs of infection for me (high sed rate/ESR, left shift, elevated white counts, etc etc) - while I've never gone septic from one they have also never been in long enough to do much long range damage. Having a vas cath of any kind in one's body long term is a serious serious risk.

But - it's an option... and one that beats the alternative at least.

So we have lots of options yet - lots of hope - and several weeks to wait and hope that this current trial works.

I will very quietly say that my appetite is dramatically improved - I am eating small meals all day long and while they do hurt/make me sick, it's manageable - which it hasn't been since September - so this is a huge 'upside' - but we're told to expect it to get worse again as the plasma wears off - then slowly improve once more as the chemo works....

so roller coaster time.

Sadly we are in the process of trying to find a loving home for our 2 wonderful cats. because of the type of chemo im on, and cats knack of carrying/contracting/spreading otherwise harmless germs that could kill or maim an immunosuppressed person very rapidly, we have been forced to make the choice to find them new homes. We're all very sad. the boys are crushed. I'm very upset about it. But - it needs to be done. Life will go on.

Just one last stupid thing we have to 'lose' in order to try and 'live'.

Upside - everyone is fairly 'well' at the moment.

Chemo is going well.

My family is fantastic.

I'm beat and recognize how lucky I am to have a bed, in a warm house, with my loved ones, waiting for me to sleep in. Focusing on that.

I haven't dropped off the edge of the earth - I promise.

2011-06-20T02:13:00.000-07:00

I am routinely surprised at how fast time just slips away when I'm not paying attention - It's been waay too long for an update, and there is indeed much to update.

I'm not really sure where to start, so I'll kick things off with kid-news. The boys are both doing very well - they are wrapping up school and are easily slipping into 'summer-mode' as the days warm up. Brandon has made friends with a little girl across the 'dandelion field' who routinely runs through the field that separates her back yard from my parent's. I can't tell you how it feels as mom to watch a little girl run across a field, just to come to the back door and ask if Brandon can come out and play. So many times I have worried and wondered how other kids will treat him, and whether he will be blessed with the same awesome freedom of imaginary play in the fields around my own home growing up... So much was learned and shared and so many memories were made by the completely natural acceptance that kids who live near one another fall into. I have found myself awake at night worrying about whether Brandon would have that joy, freedom and opportunity for growth that most other kids enjoy without a second thought. Last Sunday, disguised as a little blond haired, blue eyed girl who was so happy to find a friend across the field - one that was her age, and liked the same things and played the same games - and her one and only response to the fact that Brandon does not talk - "oh good! I know some sign language from school!"... and off they went. She has come to my mothers back door countless times in the past weeks, each time simply asking if Brandon can come out and play. And he can. And does. And my heart completely melts. And I am, once again, amazed at the complete acceptance, and the total dismissal of any of Brandon's perceived 'limits'. To her, he is just a boy across the field who likes to pick flowers and play make believe.

That just might be the single greatest gift I've been given in the past months. The reassurance not only in Brandon's ability to make and keep friends - but in the ability of the children around us to simply dismiss all the things we parents have worried and fretted over.

Throw in the little boy next door who has befriended both boys (mostly Tyler though as they are the same age) and I have had a lovely time watching all the 'normal' going on in my parent's back yard. Summer is shaping up to be lovely.

So that's the boys - both great - loving living at Ama and Grandpa's house, being spoiled by all the various caregivers that wander in and out of our days... and amazingly, resiliently, taking every bump, turn and hurdle in stride. And finding quiet moments to sneak in some 'mom' time wherever possible - be it stories, a movie together, a computer game together or simply googling how to grow peanuts or how many recipes we can find that include 'crickets' of any form...

On to the less 'fun' stuff. As you have likely gathered, we are living at my parent's place for the time being - I am useless without the nearly constant assistance from various family members, cousins, neighbours, friends, and other awesome kind-hearted people in our lives. Living at my parents means we are closer to the rest of my family (our home is about 15 minutes away from my parents home - and everyone in our 'support network' lives near my parents rather than us), and it means my parents are able to help with the day-to-day minutia that would leave me unable to function by mid-afternoon.

I am profoundly dependant on those around me - it is possibly the most difficult part of all of this. I have been so fiercely independent through even the most challenging stretches of time - but now I am done. I need help with everything. The kids care is heavily covered by family - feeding them, keeping on top of Brandon's meds, tube feeds, baths, school, etc - I can literally do nearly none of it.

I struggle daily with the reality that, even if I truly wanted to (which i do on many levels and absolutely don't on others), I could not move my family back home at this point. We've accepted that at this stage in the game (And we've learned through trials) I am unable to care for myself, never mind my children. I have no strength to do anything beyond park myself on the couch or lazyboy and read/carve wood/write/watch TV/ putter online (and online puttering has dropped drastically - the desire to draw comfort from those in similar predicaments has been overrun with the 'reality' many of those folks face. Realities sadly worse than our own - which is pretty dismal at times.

So yes - most of my day is spent on a couch, when I am not shuttling back and forth to the ER for more IV antibiotics (courtesy of an ill-timed kidney-infection-wanna-be), or to the city for chemo, appointments, procedures or any other exciting soiree at a random hospital.

The lack of strength, and inability to care for myself and my kids has been a hard pill to swallow.

The long term implications scare me.

We have alot of hope that once the chemo kicks in, I may well get back to a functional level - but we are also being logical and trying to lay some groundwork for long-term implications if things do not go as we hope they will.

Basically we will have to overhaul our life.... I cannot be alone for any stretch, with or without kids. I cannot drive (and will not in the forseeable future). I cannot clean or cook. I cannot tidy the kid's rooms/messes. I am, for all intents and purposes, more dependant than my kids in many ways. For anyone who knows me, they know THAT is the toughest pill of all for me.

Unfortunately this makes moving home a challenging goal.

In many ways I am very eager to be at home, around my things, and books, and just 'home' with my family. I miss morning coffee on the deck and kiddy pools on the grass, and hours of 'play' outdoors for the boys. I want to cook for my family, and get the boys off to school in the morning. I want to sit on my couch in the afternoon when the boys are both at school and Dave is working and just revel in the alone/quiet time to read... instead the idea of that scenario fills me with panic.

The sepsis infection a month ago (April?? I can't remember now - we've lived with my parents ever since, first out of convenience, then necessity, now - fear?) scared the crap out of me. The morning I was at my worst I quite literally could not even give myself the advil and I'm fairly sure if Dave was not there things would have gone very very badly. That stole my confidence in being independant.

Thankfully my parent's place is and always has been 'home' for me and the kids (and Dave will reluctantly agree as well). And more thankfully my parents are awesome - as are my aunts, uncles, cousins and friends who have helped to ensure (and continue to) that I am not alone... They have made my newfound dependance on others a bit easier to adjust to, and the opportunity to get closer to so many family members and friends has been an unexpected blessing.

Because of this circle of family, I don't find myself alone, either at 'home' (my parents - which they have completely made 'home' for me and Dave and the boys) or at hospitals - Chemo days are filled with family (and this week board games with my cousin Becca!) - appt's are chances to catch up with aunts or uncles, and scary procedures that require I stay in the city overnight are a chance to stay with my brother and his family and catch up...

I have leaned heavily on my family these past months, and they have not failed to stand strong.

My hope is that with time I can lean less and less - but for now, I find comfort in their company and assistance... and I am continually blessed with this chance to truly get to see how tightly knit we really are. You are all amazing, and you all know who you are I'm sure.

It is 5am and I have yet to get any sleep - between the chemo side effects and Brandon's newfound fever (cold) I have pretty much dozed in and out tonight - but I"m not concerned because tommorrow (today? - in a few hours?) I know I still have lots of family to lean on to help... and a day with my boys on the couch lined up sounds just about right.

I'll try to update more - and hopefully more coherently - sleep deprivation and general chemo-crap feeling isn't making the words come easily this morning.

good night.

K

Deja-Vu

2011-06-04T09:23:00.000-07:00

In spite of pretty sparse updates on my part, alot has indeed been happening.

I'll make this the short version...

In March Dave and I met with the oncologist/hematologist to discuss treatment options. We were given several choices, all with different sets of risks/side effects/effectiveness. As is usually the case, the more likely the option was to work, the worse/scarier the side effects were.

The decisions were basically 'drug A - with lots of scary side effects, and a 30% chance at working' or 'drug B with a 70% chance of working and even more/scarier side effects. All the choices were different types of Chemotherapy to supress my immune system and the irony of chemo is that while it can cure cancer, the side effects almost always have 'cancer' at the top of the list. So yea.

Initially we chose the less awful (and less likely to work) oral medication as it seemed a bit easier to wrap my head around. Unfortunately that option would take 13-15 weeks for me to see any improvements and it would wipe out my immune system completely.

We were comfortable with that choice and we were working at making it happen (perscriptions needed to be written and I had to have a cardiac assessment first as a baseline).

Unfortunately, while working on that, the end of one of my central line lumens broke, and I had to spend a day at the ER getting it repaired. It was pretty easy and really just took a day of inconvenience and life went on.

2 weeks after the fact, I went for my regular bloodowrk (drawn from the lumen dedicated to bloodwork - the one that had broken and hadn't been used since). 6 hours after the bloodwork and subsequent flushing of the repaired lumen, I was at the ER with a fever of 105 and bloodwork/a CBC looking strongly suspicious for a central line infection/sepsis.

The next few days were some of the sickest of my life. This bug was a doozy.

I've always been told that central line + fever = ER. I don't EVER get fevers unless I have a serious infection, so there was no 'I'll just wait it out a day and see if it passes' with me - any fever over 101 and it means I am a sick sick girl.

This was no exception - at 6pm I was feeling great - made the boys pizza for dinner, tidied a bit, had a good day and felt awesome. At 7pm my temperature was 104 and I was flat out. By 8 I was at the ER with my aunt (Dave stayed at home with the boys - thankfully it was his day off).

In hindsight, I've been told that 1) my paranoid freak-out-and-run-to-the-ER reaction and 2) The ER doc's overcautious reaction and immidiate Rocephin infusion (antibiotic) very likely saved my life. The bug that grew in my blood was a gut bug called Ent. Cloacae - one that carries up to a 52% mortality rate once it goes septic - particularly in those with compromised immune systems. Any 'silliness' that we felt around racing off to the ER 20 minutes after I spiked a fever is officially gone as it quite literally made the difference between feeling crappy for a few days and winding up in the ICU (or worse).

The experience fairly quickly got my priorities in order. Scarier side effects or not the treatment that is most likely to get me off TPN (and therefor off a central line) is the one we have to go with.

I saw Oncology on Monday, had my Vas Cath (large bore central line that goes into the jugular and hangs out of my neck) was placed on Wednesday and my first plasma exchange was on Thursday afternoon. I will do a full round (2 weeks) of the plasma exchanges, staying in the city with my brother and his family on treatment days, and trying to come home on the day in between. Once that is done I will start a 4 week course of chemotherapy. If all goes as we hope, the plasma exchange will put me in remission within about 10 days (this is the 4th round of Plasma exchanges and the past ones have always led to remission after 10 days or so), and the chemo will keep me there for up to (hopefully!) 18 months. At that point when symptoms return, we will once again do another round of the chemo.

This is a lifetime - nobody goes into remission forever. the average is 6-8 months, some are up to 18 months. If this works i will be in it for the long run.

It's scary as hell. The side effects are terrifying (seriously - and 'terrifying' from the perspective I'm at right now is pretty damn awful). There is still a chance that it won't work.

We have to try though - and we're working hard to be optomistic.

This weekend I am 'home' - at my parents - my home is too far from the ER for me to be comfortable with the Vas Cath in - it's a massive tube in my jugular that has a habit of occasionally bleeding - bleeding from the jugular is pretty much the definition of 'bad' and not the kind of thing you want happening when you are 15 minutes from a hospital. 'Home' is a few weeks away yet.
I'm enjoying my boys for the weekend then back to the hospital Monday morning.

Onward and Upward.

Down the Rabbit Hole.

2011-05-19T21:29:00.000-07:00

I talk often of the '2 hour black hole' we live our lives in - we can not plan anything concretely beyond the next 2 hours as things can change just that fast. Yesterday at dinner I was doing great, making pizza's for the boys, puttering around the kitchen, and then around 6pm I stumbled down that black hole. Suddenly started feeling tired and just totally overwhelmed with the idea of getting off the couch. my temp was fine but i felt like trash - figured I had done too much as I went shopping with Dave and did a lot of walking. By 7pm my temp was 102F (39C I think) and I felt like a bag of crap. By the time I was triaged at the ER I was at almost 40C (104F?). Not fun.

They got me in really fast (apparently 'central line' and 'fever' tends to earn one a room immediately) and did labs and cultures (from both arms and the line). My white cells were ok (good news) but there was a significant 'left shift' (some sort of calculation they do with numbers of different white cells - a strong left shift almost confirms a bacterial infection somewhere). He sent the cultures and started me on IV Rocephin (once a day IV antibiotic - the 'good' one when it comes to wanting to go home and just pop into the ER once a day for a dose) and suspected we could ride it out at home with the daily abx.

This morning I woke up feeling the sickest I have ever felt in my life - shaking chills, very high fever, just really really awful - Dave had get the advil, crush it, and put it through my feeding tube as I was too sick and shaking etc to even do that myself - it was really scary for both of us and I nearly went back into the ER right then. thankfully the advil worked well and I was feeling a bit better.

Dave had some lawns to mow and yards to cleanup so my aunt came over to hang out with me (im not allowed to be alone with a potential line infection). Parked my butt on the couch and planned to do nothing but watch TV all day.

Unfortunately my body had different plans - I fell asleep at 11am, and woke up at 1 to the phone ringing. It was the ER doctor having a bit of a panic attack. My line cultures had grown gram negative bacteria (haven't asked the do which bug specifically) in less than 12 hours (it's pretty rare for a blood culture to grow anything before the 24 hour mark I'm told). Anyways after stressing very much that I was to basically drop what I was doing and beeline for the ER I got my neighbour to drive me in - thankfully my Aunt was over (thanks Heather!!) and was happy to stay with the boys until Dave was done. Same deal tomorrow - Heather will come at 5am so dave can go to work, then she will take the boys to school and pick them up - Awesome luck she retired a few weeks ago and has her days to herself at the moment - major help.

Anyways - the bug they grew is apparently just not possible to eradicate from the line so they are popping me in an ambulance, and taking me to HSC to have my line pulled in the morning. Not sure what the long term 'keep-keely-from-drying-up-and-starving' plan is but if we can at least get fluids through an arm IV I am hopeful I can go home in between doses etc. We'll see how the night goes.

Well I'm falling asleep at the computer here so I should wrap this up…

I'll update when/if anything changes - in the meantime well wishes/prayers/etc are always welcome. Anyone local that wants to give us a hand in the coming weeks (I'm going to be pretty useless for the next few weeks as I recover - blood infections are not quick 'bounce back' type of illnesses) please either email me, or (likely better) call Dave or my mom and they can let you know if we need anything at the moment - one thing we will likely need is rides into Selkirk a few times a day - I am hopeful we can find a few people willing to help with this so no one person has to drive too often - if you're able and willing to offer rides, please just facebook/email me and let me know what days/times you are available and I or Dave or my mom will get in touch with you as we are going to try to put a 'schedule' of sorts together.

Thank you for all the support and help - we appreciate everyone, even if all you're able to do is send me an email - just chatting and keeping in touch makes such a difference!

I'll try to update tommorrow - I will be at the city hospital in the morning to have the line pulled and we will make some decisions there about longer term plans.

Spring? Seriously?

2011-03-28T07:47:00.000-07:00

Maybe it's because I 'missed' the fall time completely - or rather enjoyed watching the colors change from my 6th floor window at the hospital - but i am just feeling like it can't possibly be spring already!

Our lives have changed SO much in the past year... 2 long hospital admissions for myself, and now I am muddling along on TPN with central lines, and feeding tubes, and all the necessary medical 'stuff' that comes with all that. Between Brandon and I, our med schedule, and the IV and central line care I feel like a full time nurse most of the time.

But - we have hit a pretty decent 'plateau'... I am weaning off the steroids slowly as the side effects were too severe to stay on them - and I am feeling the lower doses... my gut, which could handle small amounts of a handful of foods has mostly just stopped again completely... I can put meds through my J tube (So thankful for that - I can put narcotics or nausea medication through it, and it goes directly into my intesting, and is absorbed in minutes so the relief is very fast - if I were to swallow the medicine, it could sit in my stomach for hours before it was finally moved along to the intestines and absorbed... I only use the J tube for meds but it is sooo worth having.) But any attempts to eat food result in pain, nausea, and me looking 8 months pregnant...

That said - if I behave and avoid food, I feel pretty good and I'm home with my family so I won't complain.

Part of my effort to avoid food has involved me learning how to use the tools in Dave's shop, and making pretty things out of wood! I am going to set up a table at some craft shows over the spring/summer to sell said pretty things - I'm really having a BLAST out there - I've been making trucks of all sorts for the boys (much to their delight!) and boxes, necklace holders, and other random fun things... using up scrap wood and having lots of fun doing it :)

Brandon is doing GREAT. I cannot state that enough... he is in such an awesome place medically right now - strong, healthy, happy, smart, and stubborn as ever (we encourage this - he will need it in the long run... though it can test my patience... LOL!)

Tyler too is doing wonderfully - he adores kindergarden and as of last week he can read!! It's slow work and he has to sound stuff out carefully but he can do it!!! Brandon is SO close - we will be very excited when we have 2 readers on our hands - I don't have to explain how Brandon's life will be transformed by the ability to read and write to us... I am very eager to 'read' what he has to say... :)

Well that's our spring update... I will attempt to be more consistent with updates... usually no news is good news!

Karli

2011-03-03T23:05:00.000-08:00

I wanted to share quickly my cousins blog adress.

http://hurrybeforeweallcometooursenses.blogspot.com/

Karli is my young, amazing, brave, awesome cousin who just returned to South Africa for the second year to volunteer at an orphanage. (after months of coming here and helping us with the boys and my hospital admission etc

She is amazing, her stories are amazing, what she is doing is amazing, and I'm excited to read of her impending adventures.

Karli you always inspire me to do better - to look around me, and do what I can to make the world a little bit better. At home or in Africa - you are doing your best to make this a better place in teh way your heart is telling you to. Thank you for being so awesome my friend!

Keely

It's March!

2011-03-03T08:37:00.000-08:00

I can't believe how fast this year is going by already!

The past 2 weeks have been good ones.

I'm in a place where things are stable, pain is managed, symptoms are under control, and my energy levels are fantastic (apparently getting enough calories makes a person feel really really good!).

I'm on pretty heavy doses of narcotics and antinauseants to BE in that place, but that's a small price to pay.

Right now I'm still getting about 80% of my nutrition via IV TPN, and almost ALL my fluids that way. I hook up in the evening to 1L of saline with sugar in it, run that in over 2 hours, then switch to the TPN (nutrition) for 12 hours.
Most mornings I'm supposed to hook up to 1 more litre of saline with sugar, but i've been skipping the morning litre as I am drinking some during the day, and by the AM I just want to be 'untied'.

The boys are doing fabulously, so I'm very greatful for that!!

This week we will be making some decisions around the 'next step'. We should have had this sorted out weeks ago, but i have been letting things slide as I'm really enjoying just 'being' for a while.

But - it's time to start moving forward - I have been 'coasting' on high dose steroids for a while now, and my body is suffering for it - the doc diagnosed me with 'steroid induced diabetes' this week, and I'm very swollen from the prednisone - it's time to start looking at other options. I suspect the next step will be Rituximab - a chemotherapy drug - which is a bit scary, but can work wonders for some people.

fingers crossed!

I'll update when I have news!

K

Mid Feb Update

2011-02-18T18:33:00.000-08:00

Wow it's been way too long since I've updated this!

The past several weeks have been a roller coaster but we are now on day 10 of a pretty quiet streak.

In a nutshell I have spent far too much time in ER's and OR's on account of severe allergies to the antiseptics they had me using on my central line - lost my PICC line, had a tunneled line placed in my chest again and now that we are using the right tapes and the right antiseptics (Iodine - the downside is my chest is dark orange all the time now - but at least it's sterile and not hivey!) things have settled down nicely.

I have gained a bit of weight (yay!! mostly fluids - but there is some 'real' weight in there too we think!), and the massive doses of IV steroids they had to use to treat the allergic reactions (basically it would start as a few red marks around the dressing, and within hours I was completely covered in hives and my mouth was going numb - it was dramatic!!) have actually stirred my gut up a bit and I've been able to tolerate some tube feeds, and some oral food! Nowhere near enough to go off TPN or even really cut back much, and I cannot drink enough to stay hydrated, but it's a very small improvement - after nothing but decline, a very small improvement is welcome.

All that said - I am still totally dependant on having people around. I cannot drive more than up the block to the school and back - and even that has to be carefully timed with my meds. I am on lots of narcotics and antinauseants just to be able to function, so my ability to think rationally and stay focused etc is limited - While it's hard financially and emotionally to need Dave home full time right now, it is necessary.

We have been doing odd jobs (making perogies for family, knitting, sewing, Dave is clearing snow, shovelling roofs, odd jobs etc) when I'm well enough to prop up our income - but at this point Dave is on the hunt for full time employment that is flexible enough to have him here when I need him. A tall order it turns out.

That aside - I am doing well.

I am hopeful. The fact that the IV steroids (and massive doses of oral prednisone I'm continuing on) did anything is extremely encouraging for future improvement.

My GI appointment this week was a positive and negative one - but we are focusing on the positive (that there is hope for some improvement, and that right now, the TPN and fluids are keeping me strong, giving me energy, and keeping me at HOME). The downside is it's clear my gut is not happy. I start the day out look somewhat OK, and by dinner time I look 6 months pregnant. No exaggeration - I am in my maternity pants and was asked when I was due the other day. It's shocking really. The GI said he has no idea if or how much things will improve but he told me to stay hopeful. So I will.

We have a few 'next steps' for my treatment.

1. Pulse Steroids (IV massive doses, every few weeks) is one option - good: it works. Bad: LOTS of side effects (bad ones)

2. Rituximab is another option - it's a Chemotherapy drug, and it is also brutal - but can be miraculous for my condition sometimes.

3. Mayo Clinic - at this point Mayo is more for academics sake - we have local docs willing to treat my autoimmune condition, using protocols developed at Mayo. The Mayo neuro team is booking about 5 months away so I wont be seeing them anytime soon - but my local docs are going to go forward with treatment trials and hope for the best.

4. My family and friends have been nothing short of amazing. You all know who you are, and you all need to know I am humbled and proud to know you and call you family.

Right now, Today, I had a good day. My family is going to bed under one roof tonight, and for that I'm thankful.

Thanks for checking,

K

Rollercoaster only begins to describe.

2011-01-30T20:38:00.001-08:00

Sorry for the lack of updates, getting back into the home groove really eats up the time!

I was discharged in early January with a PICC line (a central line that starts in the arm and threads to the heart) after I lost my chest line to infection.

The PICC worked alright with a bit of trouble that required daily dressing changes, but the TPN end of things was going very well.

Unfortunately a week ago it became apparent that the skin around my PICC dressing was no longer just irritated, but very infected.

Last Sunday I was started on 2 IV antibiotics, requiring 3 ER trips daily at about 2 hours a time. the alternative was admission and we all preferred me not being admitted.

So we limped along on this schedule until Thursday when it was decided that the infection was not improving, and I was also clearly allergic to 2 of the last 'big gun' IV antibiotics left to work with (clyndamycin and gentamycin).

Thursday night saw me in the City at the ER, my PICC was pulled, I was given a monster dose of solumedrol, and put on high dose prednisone to try and wrestle the allergic reaction down.

In a long, stressful and rediculous way I found myself racing through a snowstorm on the highway on Friday morning to try and get to the hospital in time for a cancelled spot on the surgical list to get a tunneled central line put back in my chest. Without that surgery I was going to have to be readmitted for the week until they could get a permenant line in me again.

But - in a bizarre twist of luck and fate, by noon on Friday I had my line in my chest, and was home that night with no hospital admissions.

I was put on an antbiotic I'm NOT allergic to, and that along with round the clock benadryl and high dose prednisone and I'm finally on the med - the infection on my arm has cleared up and I am getting to feel a scootch more human. my new antibiotic require only 1 infusion a day too which is awesome.

Now for the roller coaster part (yea - that was only one aspect of our rediculous week)

Both the boys are sick. Brandon tonight spiked a high fever after finally going 2 days without one... it's a nasty bug that has been hanging around for a week now. It's wearing him down pretty hard.

As we limp along on the 55% income that is provided by EI (for which we are VERY grateful) not surprisingly things start breaking. Expensive things.

Bills come in because of mixups on the phone companies end (they have admitted this and are in the process of correcting it) that randomly take 1100$ out of our bank account.

On top of all this we are all waiting on egg shells to find out just when I will be getting my appointment at Mayo, and all the general discouragement that comes with facing the reality that I am very sick and there is not magical cure in site.

Up and Down.

Hopefully tommorrow will be more up.

Rock Bottom?

2010-12-28T17:39:00.000-08:00

I sure as heck hope so.

First I'll start with the great portion of this update. On Friday I was able to go home for a 2 day/overnight pass for Christmas with my family! We did the Christmas Eve thing, Had a blast with the boys who were totally wound up for Christmas (yet fell asleep fast and without complaint - I think the energy put into being excited wore them out!).

Christmas morning was a blast - the boys let us sleep in until almost 8am, then tore through their presents fairly quickly. The only complaint was from Brandon and it was that his DS was not pink. He's going through a 'pink' stage... He got over it pretty quick when he realized the DS had a camera and voice recorder built in - these are endless sources of fun for the boys.

After gifts and croissants (my Aunt Patti made them the day before, we left them on the counter to rise overnight and popped them in the oven when we got up - they were FANTASTIC... Patti makes the BEST croissants and they have become part of our Christmas morning tradition over the past few years!), we packed up and headed to my parents house around 11 (well Dave and the boys did - I had to make a pit stop at Gimli hospital for my IV antibiotic dose - the 'deal' I had to make with the docs to be allowed to go home for the night). at 12:30 we all had apple pancakes, smokies and ice cream (this has been my Christmas morning breakfast for as long as I can remember - its the only time of year we have them and the tastes and smells are full of nostalgia for me... I only managed a few bites of each, and paid quite dearly pain wise for them, but it wouldn't be Christmas without it. After presents at my parents house, (the boys again got spoiled rotten - as did I and Dave) we all packed up and headed to my Aunt Heathers for the family Christmas dinner... lots of extended family was there, the boys were playing in the basement with the bigger kids (and having a total blast) while the adults visited and hung out upstairs. It was precisely the way I wanted to spend my Christmas, and I left at about 8pm feeling completely content with how it went - it was perfect. :)

So that was the good part.

Unfortunately I left out last week and this week. Last week I ran fevers for most of the week - not terribly high, but high enough to concern them. The big worry of course is a central line infection so they ran blood cultures, but nothing grew. Since I was already on antibiotics for the C. Difficile infection I had a few weeks ago, they didn't expect anything to grow regardless. We waited a few days and on Wednesday I got a fairly angry looking spot about 2 inches above my central line site, right where the line tunnels under my skin. The docs saw it and had a fit. They drained it and culured it, and my line site, and my blood again - but again, since I had antibiotics in my system the cultures cannot be relied upon. They were all negative but they felt confident I had a 'tunnel infection' (an infection 'around' the tube where it tunnels through my skin). These are notoriously difficult to clear, and generally the only option is to pull the line (Arg!).

They gave it a good go to try and save the line, put me on Vancomycin (big gun antibiotic), and Cephtriaxone (also a big gun) to keep their bases covered. The fevers actually stopped on Friday and I was doing alright. The morning of Christmas day though I started running a temp again. I stubbornly ignored it and took tylenol all day, however by the time I got back to the hospital I was quite hot.

Sunday brought higher and more miserable temps (103-104) and my line site was looking worse so the decision was made to pull the line. That happened this afternoon. I now have no central line, and no way to get TPN - they are giving me sugar water through a basic peripheral IV, but they cannot run TPN through it, so Im basically getting nothing for the next few days.

After a few days they will put a PICC line in (the central line that starts in the upper arm and threads into the heart) and I will be able to go back on the TPN etc, so that's good at least.

Just to ice the cake, in the middle of all this I was re-diagnosed with C. Difficile, the intestinal infection I had a few weeks ago has come back with a vengance. So I am now on a THIRD antibiotic to treat the C. Difficile.

My discharge date went from last Friday to maybe this Wednesday, to 'who knows' at this point. I'm pretty discouraged and frustrated that every time we seem to be making progress to getting out of here something happens to set things back a bunch.

All of us are pretty discouraged. The boys are sick of mom not being home. I'm sick of not being home. Dave is tired of being a single dad (a role he has filled incredibly well I must say - he has not only 'managed' to be a single dad for 3 months, but he has managed to make it 'fun' for the boys, kept the house in order, and overall has just done an amazing job of holding down the fort. I am so proud of how well he is doing, and how lucky I am to have married a man I can leave completely in charge of the kids and the house without an inkling of concern over how he would do.

So at this point, discharge has been pushed to 'who knows'. Im on 3 IV antibiotics that will hopefully get things in order. Im still anemic and I suspect well on my way to another blood transfusion. My gut is a total mess from this infection. I'm needing higher and higher doses of narcotics just to manage the pain. My temperature is still spiking very high tonight. I have no line to get nourishment into me, and now have to face another procedure in radiology to place another line (something that is always difficult for me as my blood vessels are evil).

The good news is I am cultivating some mad Crocheting skills - I have mastered hats (made a good 2 dozen so far), tank tops, and now I am onto animals - Brandon has a new moose and Tyler has a new alien... they are pretty slick if I say so myself.

Well sorry for the big pity party. It's hard to stay positive when all you get is crap thrown at you day after day. I know this will turn around and soon all of this will be a bad memory. but right now all I can see is what's in front of me, and I don't like it.

Tomorrow will be a new day.

Thanks for checking,

Keely

I think I was Hitler in a past life.

2010-12-22T18:59:00.000-08:00

Well at 11am this morning things were looking fantastic. TPN training was going beautifully, and the nurse announced I could get discharged on Friday.
Supplies were delivered to the house for home TPN. Discharge papers were drawn up. Follow up appointments were being lined up. Life was looking pretty peachy.

Then by 12:30 pm I was diagnosed with a central line tunnel infection, plans were being drawn up to pull my central line and maybe try replacing it with a PICC line, they decided they have to start me on an antibiotic that I'm severely allergic to (IV Vancomycin), since it's the only one appropriate which means they would have to pretreat me with IV benadryl which according to my body is like extremely potent LSD and renders me a useless jibbering pile of nonsense for 6 hours.

Discharge plans turned to smoke.

Throw in the fact that Dave spent the day at home quite sick with a GI virus, and it just rounded out the day quite nicely.

So yea.

The infection I have is not in the blood yet (that we know of - blood cultures are pending), but rather is in the tunnel that my central line goes through from where it goes into my skin, to where it enters my large blood vessel. The point of a tunneled line like this is so that there is some space from the site where the line enters the body to where it enters the blood vessels, so if there is an infection, it has some space between the exit site and the blood vessel. So in that respect the tunnel did work well - it gave us time to catch and respond to the infection before it made it to my blood stream and got really serious.

The down side is the vast majority of the time, tunnel infections aren't treated in a way to save the line - usually the line is pulled and the infection cleared before a new line is placed (new surgery, new site).

So at about 2pm this afternoon I was prettty furious with the whole situation. It feels like we get 1 step forward and slide 2 steps back every time we try to make progress and it was getting very frustrating.

Since then things have gone a little smoother. My first dose of Benadryl and Vancomycin went very well and I didn't react at all to the Vanco. The benadryl, as usual, stoned me up good, and after a nice fun trip for an hour or so I passed out cold until a little after 6:30pm. Aside from horrible zombie dreams (seriously vivid... not cool) it was a good nap and I woke up in a bit of a better place.

the plan now is that Infectious Diseases will come assess me tommorrow hopefully and make a decision on whether or not to pull the central line. If they do pull it, I will likely have a PICC line placed tommorrow to take it's place. If they don't pull it, then we will hope the abx clear the infection and play it by ear.

In the meantime none of this necessarily writes off my chances of a Friday discharge. I will still need IV antibiotics twice a day, but I could theoretically go back and forth to the local hospital for those once I"m discharged.

At this point it's all very much in the air - which I don't do well with - emotionally I need a plan so I can just relax.

But I'm learning to be 'ok' with not having a plan. I realise sometimes there isn't one and that has to be manageable too.

Trying very hard to be 'Zen' about it all.

Any way I cut it, it sucks big time.

But it could always be worse.

K

The Club Nobody Want To Join.

2010-12-21T20:29:00.000-08:00

I'll try to make this brief but informative.

1. I started my home TPN training yesterday and it is going great!
2. If training continues to go well I *MIGHT* (saying this sooo quietly) be discharged on Friday!
3. This weekend my doc gave me 'NPO' order - no food or drink by mouth. with the exception of lifesavers and jolly ranchers. This has resulted in 2 distinct things:

~ My symptoms (bloating (as in 'hey lady the maternity ward is 2 floors down' level bloating), pain and nausea) are improving.
~ I am turning into more of a food-crazed zombie than I was before. I've reached the point where the idea of a platter of raw onions and mushrooms (the 2 foods I despise the most) sounds positively mouthwatering. In spite of the simplicity of the concept (don't eat or drink... easy enough) this is one of the hardest things I have ever had to do... It is very very very hard to refuse myself food or drinks... it gets to the point that all I can think about is food. It makes me very sad to think that I may never be able to eat or drink again... While I am glad they have ways to keep me nourished and functional without my having to eat/get sick... I did not anticipate the sheer difficulty of refusing a body (however broken) of the joy of eating. I am able to suck on lifesavers and jolly ranchers at this point without too much trouble (though I think I may have reached even their limit today as I've been pretty sick tonight... apparently 'a few hard candies' does not mean 'go buy out the drug store downstairs of lifesavers and eat all 145 of them within 3 hours'. They could have mentioned that.

4. The boys Christmas concert was last night and thanks to some serious logistical fenangling I was able to make it and it was fantastic... Brandon had a blast on stage, and Tyler, our free spirit, was dancing up a storm (while everyone else stood stalk still... ) twirling and ducking and swinging his arms in the air.... cutest. thing. ever. That boy has no fear, and is completely at ease with himself... I find myself seriously considering homeschooling him next year because I loath the idea that he would have that spirit stifled by the harsh realities of elementary school social life. :(

5. I recieved a scholarship last week. Based on academic merit, and financial need, I was given a bursary to purchase a Macbook laptop that I had quoted and applied for back in the fall - it's a technology grant for students with disabilities, my case being that I need a laptop in order to continue my schoolwork while I am inpatient since this looks to be a semi-regular occurance in my future. I had pretty much forgotten about it as it had been so long since I had applied and then it arrived! So this weekend I picked up a brand new MacBook Pro and I am absolutely in love with it!!! (And the high speed internet signal it can pick up from the hot spot downstairs!)

I think that's most of the big news... so much for short...

Thanks for checking!

K

The Roller Coaster.

2010-12-17T05:50:00.000-08:00

Here's how the last few days have played out:

Wednesday:

1. Got my official training dates of Mon and Tues (20th and 21st) and noise was made of a Tues or Wed discharge (just in time for Christmas!).

2. Got moved to a new room that was in a better part of the ward, has a better view and was nice and quiet.

3. Found out I won a $2500 technology scholarship from school to purchase a laptop so I can continue my schoolwork while in hospital.

Overall Wednesday was awesome!

Thursday (aka - reality check):

1. Found out everyone who suggested I might go home next week did not know what they were talking about and the supplies and such needed for me to go home will not be delivered until *maybe* the 29th of Dec but with the holidays, most likely not until the 6th of January. Until then I sit in this hospital and wait.

2. My gut has launched into a seriously painful stage of 'who knows what's wrong now' and I spent most of the day hawking narcotics that still barely worked. Today we have to figure that out.

3. at 10pm I spiked a fever that earned me a full workup (blood cultures, labs, urine, etc etc. The fever kept up all night and I still feel like garbage this morning.

4. I developed what looks like a skin infection on my ankle last night that they are going to drain this AM and is hopefully the source of the fever (though that's doubtful).

Amazing how quickly things can go from 'awesome' to 'are you kidding me??'.

So for those of you that pray/hope/request from the big cahoona... anything would be appreciated at this point. Specifically this fever needs to go away so I can go home and see my family on a pass this week. And they need to figure out a way to get me out of here before Jan 6th as the whole 'nobody in our family has a job right now' thing is becoming problematic (while we have had terrific support from family and friends, it's still doesn't replace a full time income), and until I'm home nothing on that front can change. (and even once I'm home we still have a whole host of issues to sort out before my other half can actually go to work outside the home again.)

So yea - a teensy bit of stress/frustration/sadness here.

Trying to wrap our heads around me being in hospital for Christmas as that is apparently going to be the case (though I should get a pass for Christmas Eve and Day so I can spend them with my family at least).

Going to attempt to squeeze a whole seasons worth of traditions into a few day passes this weekend.

And on the bright side I think I will go computer shopping on Saturday after we drop the kids off at my parents house for the night! Nothing like a new toy to brighten up a crappy week.

Saturday Night Musings

2010-12-11T18:08:00.000-08:00

Not much new - we are tinkering with my pain meds and nausea meds to try and find a decent balance that will allow me to go hom comfortably.

Im currently getting Dilauded (Hydromorph - a purified form of morphine) every 2 hours but since that isn't terribly great to keep up at home we decided that we will try a fentanol patch on Monday - the patch will give me continuous narcotics and I will take the hydromorph as a 'breakthrough' pain med when the pain is bad enough that the patch doesn't cover it.

Lots of drug juggling but we are getting to a point where we have a good balance.

Similar deal with the nausea meds - I am now on 3 different nausea medications (all IV) and was still getting nauseas so we played around with my oral meds and changed them to IV to see if that helps the nausea - it's really just a game of 'how can we keep me comfortable and functioning until I get to Mayo in January' - making sure my Christmas is as comfortable and pain free as possible.

Which sounds like a good deal to me.

I'm feeling a little overwhelmed wiht all the medicine, and hate to be on it all (especially since I was off everything in August... :( ) but at the same time i know I need it.

So life goes on.

The C. Diff treatment is going well and it appears Im recovering. I can have visitors without precautions on Monday it looks like. So that's fantstic!

It looks like I'll likely need another blood transfusion this week as my hemoglobin is dropping pretty quickly. This is (in a twisted way) good news as it means my immune suppressant is doing it's job - we just have to hope that it's killing off the bad cells along with the good ones. We will know in good time!

Well I'm typing this with my eyes closed now - the IV gravol I just got has officially made 8:30pm bed time for this Saturday night!

Thanks for checking,

K

Isolated.

2010-12-08T15:57:00.000-08:00

Yesterday afternoon I tested positive for Colostridium Difficile (C. Diff). It's a hospital aquired infection that people can get when they are on antibiotics, or are immune suppressed - I am both.

It's a nasty one.

It's also one that earns you isolation and means I cannot be around Brandon, or anyone who cares for him - so no visits home, and no family visiting me here.

It's treatable, they caught it early, and I am on the anitbiotics to treat it and they *seem* to be working so far (the docs say not to get too excited yet - because I'm immune suppressed it's still anybodies game for a few days yet). But I still have to keep my distance from family until next week.

So just another stroke of bad luck to throw onto the pile.

Thankfully (in a wierd twisted way) my roomate is presumed to have C. Diff as well as she is symptomatic - while unfortunate for her, it means they will not isolate me in a single room, and split us up. At this point the only thing keeping either of us sane is the fact that we have eachother - we get along fantastically, we spend our days visiting, joking, knitting and watching movies... splitting us up at this time would be a nightmare for both of us.

So at this point both of us are in 'lockdown' - any docs or nurses coming into our room have to wear gloves and gowns, and we are not allowed to leave our room without gowns and gloves.

It's a good arrangement and we are very thankful that we don't need to be split up. I would go nuts in a single room all alone. :(

Well thats today.

December 6th Lowdown

2010-12-06T21:18:00.000-08:00

Well it's been eventful.

I will try to make this a 'quick' version of the past week.

We have a date for TPN training (this is where they train me to do the IV nutrition stuff own. I cannot be discharged until this is done.) - it should happen the week of the 20th of Dec. So if the stars line up I MAY be home on Christmas eve.

We are working on hopefully getting a home nurse lined up to do the TPN at home - if this works out I might be able to go home around the 15th and do the training as an outpatient. I have no idea if this will happen but time will tell.

Regardless I am mentally ready to be inpatient over Christmas.

I have been able to go home on day passes to visit my boys regularly so that helps everyone (except Dave who has to do all the driving - though he's been awesome and doesn't seem to mind too much). Last night we had Brandon's 8th birthday party and I was so happy to be able to be there!

It was a close call - my day pass yesterday was cancelled because I spiked a fever. I have been running fevers since Saturday afternoon and they have been playing the 'name that infection' game trying to figure out the souce (the worry with a central line is of course a line infection which can be VERY bad very fast). Thankfully today the source reared it's ugly head and I have a full blown gut infection - tests are pending to determine whether it is C.Difficile (which would suck - but would still be treatable) or just a garden variety virus, either way my gut is even less happy than it was before and I am in a world of hurt today. Loving the morphine.

On Wednesday (I think?) I had a blood transfusion because my hemoglobin was 74 (7.4 in US terms) and I was pretty symptomatic - turns out my iron levels were very low - they figure the anemia (low hemoglobin) is a combination of the low iron, and bone marrow suppression from my immunosuppressant medication.

Friday I had an infusion of Iron Dextran - IV iron - to beef up my iron stores.

The blood transfusion was amazing - night and day - my cheeks are pink and I feel fantastic!

I am currently looking very chipmunkish - and I have gained 10lbs in the past 2 weeks on account of fluid retention - my Albumin levels are low (it's a protien and levels drop when you're starving) and apparently this causes fluid retention in the tissues and leads to a puffy face (and puffy everything!). It makes me look healthier - but it's an illusion apparently.

To round things off it was decided last week that my autoimmune disease has indeed relapsed once again. I started the plasmapheresis treatments for the 3rd round today.

If this round of treatment does not result in a 'sustained remission' (meaning I dont relapse for at least a few months) the hemotologist wants to move onto a med called Rutuximab (not sure thats spelled right) which is a chemotherapy agent that works very well with conditions like mine apparently..

So we still have lots of options which is reassuring.

I beleive that is all -- as if it's not enough...
as I said - eventful!

Well off to sleep - hoping for a restful day tommorrow...

K

Not much new

2010-11-25T19:56:00.000-08:00

Well the lack of updates are simply because there is not much to update.

I am still in the hospital, and the word on the street is I could be here for several weeks yet. Possibly for Christmas.

Apparently it takes a very long time to get home TPN/Hydration organized, and right now the department is going through staff changes, so the wait is even longer than normal.

Which means I sit here in the hospital. It's pretty uncool.

Dave is home with the boys, he's off work on leave because I'm sick, which helps with childcare alot.

I've decorated my room with Christmas decorations, figure I may as well settle in.

Trying to make the best of it.

They are letting me go home on day passes every couple days which really helps the morale...

At this point im really missing my boys though. visiting every few days doesn't quite hack it.

Health wise all is the same. I'm still waiting to get the date for Mayo Clinic - should get a date soon as the Manitoba Health funding approval came through this week. now we just need the date!

hurry up and wait.

Wel I'm off to bed now. Hoping tommorrow is productive?

K

Things are looking up!

2010-11-20T10:16:00.000-08:00

Well after weeks of pain and increasing morphine doses and test after test coming back normal with no explanation for the pain the docs decided we had to pull the feeding tube and let it heal and start over. (ugh!)

At my insistence they agree to at least TRY a different type of tube (there are different styles of feeding tubes - some are held inside the stomach with a 'coil' in the tubing (that's what I had) and others are held in the stomach with a balloon filled with water.

Friday morning I went to the IR suite and had a ballon style Mickey Transgastric Jejunostomy tube placed and 6 hours after the surgery it was very clear that was our answer - the pain is GONE and continues to be GONE today even with rapidly decreasing doses of morphine.

So that's the good news of the week!

Now we are just waiting on me getting trained to do the TPN at home then I will be out of here!!

Unfortunately there have been staffing changes etc with the home TPN crew so they aren't really sure when they will be able to train me at this point. They are hoping this week but it may not happen till next... which is supremely discouraging.

But - I can at least start going home on day passes, and coming back for TPN overnight. We will see how the week plays out.

Things are looking up :)

Where things are at

2010-11-16T14:55:00.000-08:00

Well things have been chugging along here.

We have come up with a good morphine/anti-nausea med schedule that is controlling the pain very well so that is a relief. Unfortunately I have the metabolism of a mouse so it means small doses of morphine every 2 hours by IV - but thankfully since I am in hospital the nurses just do it automatically and I don't have to remember anything... remembering to blink is hard enough for me - I can't imagine remember a med schedule that involves 'every-2-hours' of anything.

So the good news is I'm officially 'pain-controlled' which is a very big step.

The down side is that's only half the equation.

I had my hissy fit yesterday about the lack of an explanation for the pain.
I had a second hissy fit today (OK maybe not - I have a new attending and he's very pretty - so my hissy fit might have been more like me drooling and saying 'yes doctor' while batting my eyelashes - but the good news is the new attending is very proactive and wants to get to the bottom of this, so my inability to stop staring at his jawline was likely not too detrimental to my care).

The docs all agreed this morning that it's time to ramp up the investigation and figure out WHY I am in so much pain (that only took 2 weeks).

So this morning they did more labs, and it turns out my bloodwork is suspiciously looking 'infectious', and 'progressively infectious' at that (just meaning that my blood cells have gotten more and more unbalanced over the past week - they are not totally outrageously abnormal yet, but he said the 'trend' is definately pointing towards an infection that is going on). So they finally bit the bullet and ordered an abdominal CT scan today. They are specifically looking for an abcess in my abdomen, likely caused by the tube. This would be 'good' in that it's a cause we can treat. This would also not be unexpected as I am on immunosuppresants, so certainly an infection would not be a surprise.

I didn't think I'd say I was 'hoping' for an abcess, but at this stage in the game, if it is NOT an abcess, I don't think they have any clue what to do next.

So fingers crossed..

Otherwise things are plodding along quite well.

Dave is home with the boys full time and I think it has made a HUGE difference for both him and the boys. The stress of child care is gone and the boys have their dad which they desperately need right now.
The boys are doing surprisingly well considering they have been sans-mom for the better part of 2 months now. We talk every night on speaker phone which helps, but it's not the same as having mom. That has been very hard on all of us - I miss being a family. I cannot wait to get home and be with them every day again. But the boys have done very well in spite of it. I think largely because of family support - they have had my parents and Dave's parents and other family members helping out so much and because of that help we have been able to minimize the disruption to their normal schedule, which helps tremendously in keeping them calm and happy.

So that is a huge relief...

Life goes on.

My central line went in yesterday, it was a breeze thankfully - so I now have the central line (Hickman) that comes out of my chest just below my collar bone (no more scoop neck shirts unless I want to scare everyone), and I still have my large bore central line (Vas Cath) that comes out of the side of my neck (gotta find some turtle necks!). Throw in the feeding tube, and the implant in my heart from when they repaired the hole and the running joke is I am turning into robo-cop.... I am wondering if they can implant a lighter in my pinkie finger next time their mucking around with me.

But the central line is a big step to going home!! I should start training on how to do the TPN and line care this week, and if we can get the pain figured out and dealt with I might get to go home late next week!!! (that's a big might - but I cant stop myself from getting excited by it!).

Mayo we are still waiting to hear from. The ball is in their court and we are waiting on an appointment date now. Could be next week, could be next year - no clue at all... I will start pushing them to followup later this week if we don't hear from them.

Progress is slow - but it's progress. We're going in the right direction.

Thanks for checking...

K

Saturday Extraordinaire

2010-11-13T16:05:00.000-08:00

Well for a day that started off VERY painfully, today turned out not too bad for a Saturday in the hospital.

Unfortunately the pain is still a major problem. And also unfortunately, since it's a weekend now, and doctors seem to turn into pumpkins from Friday night to Monday morning, there's really not much to be done about it but throw more morphine at it and wait till Monday.

Thankfully they are agressive on the pain control front, so I am comfortable. A little too comfortable probably, but hey - I'll take it.

My parents came for a lunch date today and we had a great visit! They bought me sushi and I had my requisite 2 bites which where of course glorious.

My good friend Erin and her little boys and her mom came for a visit afterwards which was wonderful! I havent seen them in so long and it was awesome to catch up! :)

As they were leaving my good friend DD showed up with my long promised cheeseburger!! My 2 bites of that were also glorious and DD and I had a GREAT visit - did our nails and got all girly - it was exactly what I needed this afternoon :)

Now it's 6, and I'm settling in for the evening, and feeling fairly positive about everything (again - might be the morphine... but i'll take it)... It was a very nice day with lots of reminders of how many people out there are supporting us at a tough time. We are a lucky family.

Tommorrow should be quiet - my uncle will be coming for a visit and I havent seen him in ages, so I'm excited about that!

otherwise i will lay low and gear up for my line placement on Monday morning. (and the hissy fit I plan to have again over this pain and the lack of improvement...)

So that's that.

A good day. :)

Dont forget to check out my non-medical - morphine-riddled-musings blog - www.hospitalaquireddragons.blogspot.com

Thanks for checking,

K

Friday Night.

2010-11-12T18:45:00.000-08:00

Well my cheeseburger lunchdate was unable to make it today (though she will be here tommorrow with the goods in tow I'm told!), but the day was rescued when Dave and the boys showed up for a dinner date with me with (you guessed it) a cheeseburger! 3 bites were all I needed to quiet the craving... I paid for them, but boy were they worth it.

Mostly though I enjoyed a full hour of visiting with my boys!! They were happy little ducks - on their way to a hockey game with Grandma Linda and dad. I'm a bit sad tonight - I got the tickets over a month ago, kind of as something to look forward to when I got out of the hospital - I distinctly remember thinking 'theres NO WAY I'll still be here on Nov 12th'... phhht.
But - Hockey games are among Brandon's favorite events to go to and it's awfully hard to stay sad when I got to see how COMPLETELY stoked he was about going!! Both the boys were pretty excited, and I really hope the night is as much fun as it promises to be! Plus Grandma Linda LOVES hockey games, so I'm sure my ticket will be duley appreciated.

Just to double up on the dissapointment, tommorrow is our Firehall Social - we have been looking forward to this social pretty much since last year when the '09 social finished up and we were driving home at the end of the night. The past few months we have been very excited about our 'date night' - we wrangled child care, and it was a chance to go out, as a couple, with friends from town, and just relax and have fun. The past 2 months it has also been a 'treat' for when I was finally out of this place.
I still planned to go, i figured i'd get a pass from teh hospital for the night.
It's clear however that I cannot go. I am on SO many IV meds, and im still in so much pain and just so sick that a pass is out of the question and honestly I suspect the drive out to town alone would be too much for me.

Im so dissapointed in my body at the moment. I know it's 'just' a social and there will be one next year etc... but still. I really wanted to be there. Dave wanted me there. our friends wanted me there. and instead I will be here. ~sigh~

That's my pity party for the night. I guess I'm allowed to gripe about the petty stuff now and again.

On the plus side I have started a new blog - I've had several friends suggest I blog my morphine riddled ramblings (often late night facebook musings) so I finally caved and started a new blog: www.hospitalaquireddragons.blogspot.com
It's mostly medical-free, and just my brain on drugs basically... which im told is a little scary.

thanks for checking!

K

Friday

2010-11-12T10:33:00.000-08:00

I am on the 6th floor of the hospital.

Because of 'seniority' I managed to wrangle a great window slot (they are double rooms, one has the window, one does not - a long hospital stay with no window sucks eggs.).

From my window I can see the south side of the city, which is beautiful - lots of churches, nice buildings and LOADS of trees. I can see my van in the parking lot below me, looking fairly dejected and sad.

Unfortunately, I can also see a Mcdonalds.

Yes. The-girl-who-cannot-eat is laying in a bed from which she can see the Golden Arches.

They taunt me... their glowing yellow halo talks to me at night (ok that might be partly the morphine)... I'm distracted by them during the day, my thoughts constantly lured to the delectable cheeseburger I can almost taste.

Yesterday I had a mini-meltdown on facebook about how much I would give for just a few bites of a mcdonalds cheeseburger...

Today my good friend is coming to have a lunch date with me - and she's bringing me a mcdonalds cheeseburger... I am excited at just the prospect of smelling it at this point.

Mmmmm... cheeseburger.

So - that's the state of things right now - I have degenerated into a food frenzied zombie who thinks only of the next bite of real food she has ahead of her... i can only have a bite - and I usually pay dearly for it afterwards with pain and nausea - but it's simply impossible to NOT eat at least a bit... I am definately getting a lesson in the realities of those who are starving... it's as much mentally maddening as physically awful.

Things otherwise are pretty much the same - lots of IV meds are controlling the pain and nausea and misery quite well, but we still have no idea what the source is. I amd asking for a meeting with my doc today to discuss it as I'm concerned about the fact that it's not at least improving at this point.

We'll see what he says.

I had plans this weekend I had hoped to get a pass for but it's looking increasingly unlikely at this point. A) they wont give me a pass and B) Im physically just not able to leave the hospital right now.

Im heartbroken as they were long standing plans (a hockey game wiht my boys and a social for our firehall) and I have been looking forward to them both for months.

But so it goes.

Well my ~~cheeseburger~~ friend should be here soon, so I will leave it at that for today...

Thanks for checking.

K

Wednesday

2010-11-10T21:30:00.000-08:00

Tonight's blog post is fuelled by a freshly infused dose of morphine so I apologize if it's wandery or flighty...

Today was a better day. Not fantastic, but better, and after yesterday, I'll take better.

We managed to get by on less morphine today, so that's a step in the right direction.

The pain was a little less awful, so also good.

Time has made a few things clearer too which helps.

My blood work now clearly shows that I am fighting an infection. This confirms that I am very likely fighting an internal infection where my feeding tube is - likely inside the stomach itself.
They feel I probably have an ulcer (or possibly a few) caused by the tube and the infection.

This is actually good news. I am already being treated for the infection and the antibiotics should kick in soon. They started IV meds for an ulcer today and expect them to work in the next few days.

So fingers crossed.

I had another round of plasmapheresis today, so we're well on our way - next one is Saturday morning.

Monday morning I get transferred to the other hospital in town to have my fancy tunneled 'hickman' central line placed (they call it a 'cooks catheter'?) in my heart.

we're slowly making progress towards home.

The family is doing good... Dave is getting stuff done around the house, the boys are thrilled to have dad to themselves, and I am certain this leave from work is going to be the best thing that we could have done... our whole family needed it.

I have had loads of visitors which is absolutely wonderful - even the quick visits really help break up the monotony of hte day here and just make it easier. :)

It's going to snow tonight, and even now, at 28, I get giddy when it snows! :)

well Im off to sleep.

thanks for checking,

K

Lessons from the Dark Side

2010-11-09T16:39:00.000-08:00

Today was bad. Until about 3pm, then we hit on a good balance of 'less morphine = a bit more pain but way less nausea' and then things improved.
We still have no idea where the pain is coming from. Surgery says it's not surgical which is good. Interventional Radiology says it's not related to the feeding tube placement, which is good. Beyond that they have done nothing to figure out what is really happening. So the plan is to have a hissy fit tommorrow during grand rounds and hope it accomplishes some further investigation to figure out why I'm needing round the clock morphine just to move.
The good news is I had my first plasmapheresis treatment today. So that is underway.

Onto the lessons.. I've been in hospital for the most part, since Sept 19th. That's 44 days (I was heavily medicated when I did my '50 days in the hospital the other day - forgive my math). that 1056 hours.

Thats alot of hours to kill.

So for your amusment, here is a short list of the mad skills I have honed while stuck here. I like lists.

1. I knitted a sock. just one. it took 2 weeks and I really disliked how it felt on my foot and didn't see the point of spending 2 weeks on a second sock that I didn't like. but - I knitted it... and it resembles a sock. And I used 5 knitting needles to do it which was pretty impressive.

2. I learned how to befriend health care aids and convince them to bring you their beloved Far Side book collection - bribe them with your bacon.

3. I learned how to befriend the food services dude and convince him to put bacon on your tray - bribe him with candy.

4. I have learned that, when needed, turning on the tears can get week long waiting lists shaved down to hours.

5. I have learned that befriending the cleaning lady means your floor gets mopped 3 times a day - which in a hospital is golden - just think of how disgusting the floor is.

6. I have learned that getting to know the porters on a first name basis means you get taken to your room out of qeue and ahead of all the other suckers waiting for pickup. (also - being 95lbs means that they want to push you 6 floors up as most of the other suckers waiting for pickup are pushing 200lbs and are alot more work to push)

7. I have learned how to make a compass out of a magnet, the needle from an insulin syringe, a soup bowl, and a 2"X2" piece of guaze.

8. I have learned that Far Side comics are AWESOME when you are doped on morphine.

9. I have learned that pretty much everything is AWESOME when you are doped on morphine.

10. I have learned that it's all but impossible to truly study when you have narcotics coursing through your veins. I can try... I can read, and write... but afterwards, when the drugs wear off and I try to make sense of what I read or wrote I realise it is gibberish and usually involves talk of goldfish and training wheels.

11. Salt packets are more precious in a hospital than cigarettes are in prison.. the black market here puts a heavy premium on salt packets.

12. Visitors - any visitors - even if their not your visitors - are awesome. I have learned to chat with just about any poor soul who ventures too far into my room and I catch sight of. I've gotten to know all sorts of awesome folks that work here, and many people that I think were just lost but ended up in caught in a conversation with me.

13. I have learned to play 'cotten eyed joe' and 'corn in the pan' on my fiddle.

14. I have learned how to shave my legs in a sink with crappy water pressure, while hooked up to multiple IV's and balancing between a laundry basket on wheels, and a toilet.

15. Lastly I have learned how to fall asleep in about 0.04 seconds, with all the lights on, people yelling in the hall, beepers beeping, pumps alarming, roomate snoring, and at times someone accessing my central line. Pure physical exhaustion sure does away with insomnia pretty fast.

So there's my list for tonight.

Planning on using the tear factor to get things moving on the pain front tommorrow. Hoping it's effective.

Till then...

Off to sleep soon.

Thanks for checking.

K

Monday

2010-11-08T18:08:00.001-08:00

Today was not a good day.
Too much pain, and no real answer as to why. Lots of morphine that didn't quite work as well as it should have.
Plasmapheresis was delayed a day because too many people at the other hospital in town needed it today and the techs were unavailable until tommorrow. So pretty must spent the day hurting and getting nothing accomplished.
Oh well.
I'm too sore and tired to really care tonight.
We are hoping the pain is from the Jtube infection. We will know tommorrow as the antibiotics will be in full swing and if I'm not in any better shape by then then they will do a CT to figure out what the heck is going on.

Best case scenario it's all from the infection and by the AM I will be worlds better and life will go on.

Fingers crossed.

I wanted to do a nice witty blog post tonight but i'm too beat - so this is all you get.

Hopefully tommorrow will be better.

Night folks,

K

A change of pace

2010-11-07T17:27:00.000-08:00

Alright - Tonights update is going to be a little different - a quick bit about me, and then some bragging time about the boys. Not enough kid-action on this blog.

Me:

1. I tested positive for a staph infection at the Jtube site. It's internal, likely an abcess in my stomach or the tube track. While any infection on all these immunesuppresants is not great, it is an explanation for the ongoing pain and morphine need, so that at least is good. They started Rocephin (big time antibiotic) and expect things to improve in the next 48 hours.

2. Today was lovely - lots of visitors which made the day go by quickly.

3. Tommorrow Dave will be going to his last day of work until the new year. He will be going on EI's Compassionate Care Benifits - the gov't will give him 50% his wage for 6 weeks to help support and care for a gravely ill family member. It is a MASSIVE pay cut but we have some savings and think we can coast until after Christmas. We hate to eat up our savings but that's what their for. This will be VERY nice for us as far as child care, and support for me when I get home. I am very excited about having my husband home full time for the next 8 weeks (there is a 2 week waiting period for the EI benefits, so it's 8 weeks total).

That's all that's new in my world. I should start plasmapheresis tommorrow, and the week will be spent doing that. My tunneled central line will be placed (this is a TPN line that they will put in below my collar bone and will run into my heart) on Thursday. Otherwise we will just be spending the week muddling through treatment and hoping this infection clears.

Now - On to Part 2 - The Boys!!!

The boys are doing fabulously right now. I cannot say how wonderful it is to say that.
Dave and the boys have mostly set up camp at my parents house - partly for the extra help, and partly for the support of family. As such the boys have been very comfortably settled in their routines, and my being in hospital for 2 months has had little effect on their day to day life.

Tyler: Kindergarden is going great - he LOVES school completely and without reservation. Everyone is his friend, everything is his favorite class, and every story is the best. He is just so full of love and excitement for everything he does, it's hard not to be happy around the boy!! It's been so awesome to see this little person emerge as he grows and learns.

Brandon: Grade 3 is going very well. He is on the brink of reading - and is able to sound out small words and recognize many by sight. He is a little behind his classmates, but not too far, and is learning steadily! He is getting stronger all the time, and has grown like a weed this fall! Health wise he is the most stable we have ever seen him... it's such a blessing to see him doing so so well!! He has turned into a VERY demanding and stubborn boy - and I say this not in a negative way for I feel strongly that it will be these personality traits that serve him best in the future. He balances it well with an obscene amount of patience, which again will be a VERY helpful trait to have given the challenges he will face as he grows up. His personality is shining through with all the health and stability and he is really just a totally cool little guy. :)

I cannot wait to get home, and be with my family for the holidays. We have lots of little plans for the season - some old traditions, and some new ones we will be trying on for size. We have a birthday party to plan for Brandon, and we are eagerly awaiting the snow so Dave and the boys can get the skidoo running again.

I know the Mayo Clinic trip will take me away from my family and home for likely a week in the middle of all this and I don't like that idea, but so it goes. I do look forward to what they have to offer us, so it will be worth it.

In the meantime we will soak up every day we can until Dave has to go back to work, and I am hopefully more stable and adjusted to our 'new normal'.

Tonight I am looking forward, and I like what I see.

Thanks for checking,

Keely

Musings from the Inside.

2010-11-06T15:57:00.000-07:00

Weekends in the hospital are the worst.

Nothing happens. When you're sitting in the hospital you want to feel like things are happening and moving forward, and spending 2 days doing and accomplishing nothing is hard. I always end up a bit blue on the weekends.

They are also days without visitors usually - which compounds the blueness. During the week people come by alot because they are in the city for work and my hospital is not too far out of the way on their way home - most of my family lives out of town, so they are only in the city on the weekdays for work.

So today was a long day. I did manage to get some writing done and even got a nibble on a freelance article for the newspaper which is exciting.. but for the most part today was like most saturdays in the hospital. Depressing.

In the big picture things are happening.

I had my Vas Cath central line placed yesterday morning, very successfully (I love my Interventional Radiologist - he is amazing!) so I am ready for the plasmapheresis (which will start Monday). TPN started last night, so I am hooked up to that for 18 hours a day (I should be down to 12 hours by mid week) and already today my pain level has dropped noticably since I am no longer forcing food into my broken gut.

My cardiologist stopped by yesterday and will support our claim for Compassionate Care Benefits through EI so Dave can take the next 2 months off work to help me get adjusted to our 'new normal' when i get home on TPN - as well as manage the boys care. It will be very nice to have him at home. He will get 50% of his income through EI and we will top it up with what is left of our savings which will give us until January 1st to get settled and readjusted and hopefully make the Mayo Clinic trip in there.

The 'new normal' is daunting. It's very hard being 'broken' when for so long I was the one that managed most of Brandon's care. Depending on everyone around me to not only take care of Brandon, but help take care of ME is a very difficult adjustment.

I dont like being dependant.

But in the words of my Grandma - it is what it is.

We will take it one day at a time. And we'll manage.

Off to have a jolly rancher for supper.

A more positive blog post will follow tommorrow I promise.

Thanks for checking in,

K

Thursday - Day 50ish?

2010-11-04T20:34:00.000-07:00

Well I have been in and out of the hospital for 50 days now. I had my week at home last week which was fantastic, but otherwise it has been a long haul.

Today was a quiet day for me, but a busy one for the doctors. Lots of plans were laid and we now have a course of action. Having a Plan is tremendously helpful with stress levels for me, so I am happy with this.

The plan is at 8am I go downstairs to have a Vas Cath placed in my neck - this is the large bore central line (goes into my heart) that comes out the side of my neck - I had it in september. it sucks. but they need it to do the plasmapheresis which gets rid of the antibodies that are attacking my nerves.

they will use this line for TPN (IV nutrition) starting tommorrow night. I suspect they will start plasmapheresis treatments either tommorrow or Saturday.

Next week sometime I will go back to the OR to have a Tunneled Broviac central line placed which will go into my chest below my collar bone, tunnel under my skin to my neck, where they will thread it into my large neck vein, and down into my heart. This will be a TPN line that will stay there permenantly and will allow me to go home on TPN. it will look like a large IV coming out from below my collar bone - it's a 'nicer' option than the PICC line in my arm as it is under my clothes, and less likely to get infected, and easier for me to use as I will have 2 hands. I'm looking forward to this line. Once I have it the Vas Cath will come out (yay!) and life will go on.

Discharge home on TPN will take some time. 2-3 weeks is the standard, but they are hoping to get me out closer to 2.

Home TPN is complex... I will be hooked up to the IV pump 12 hours a day (6pm to 6am), and will have to deal with caring for hte central line. but i will be HOME so it will be worth it.

The risks are serious - long term use of TPN can damage the liver, and is generally not 'healthy' though it is healthier than starving so it's not a difficult choice.
The risks of a central line are serious as well - with the line in place, anytime i get a fever is a 3 day hospital admission to rule out sepsis... this could get crappy if i get fevers - but thankfully fevers are not something i get often, even when i am sick, so hopefully this will not be a regular occurance.
Sepsis is obviously a scary risk - but they will be watching me very closely with regular bloodwork to watch for signs of infection, so hopefully we can avoid this as well. or at least nip it in the bud if it develops.

The hope is that Mayo will have some options to get me back on gut feeds and off the TPN. They are going to put a push on that referral and hopefully get me there this month.

Dave and the boys are doing ok - we have lots of help from family with caring for them and getting them to school and home and we have some savings tucked away that we have been using so Dave can take additional time off work when needed - thankfully his employers have been very good about letting him take this time off.

Many people have been asking how they can help - if you want to help out either physically or financially, please email me privately at kschellenberg@mts.net - there are several options that family members have been arranging (from a savings account for medical/transportation costs, to an account at a local resturaunt for take out, to laundry/housekeeping costs, etc) for different ways of helping our family - we don't expect anything but we appreciate all the support and help that has been offered - we have been overwhelmed with all the support we have recieved the past 2 months - we are very blessed with our family and friends - thank you everyone.

On that note I will call it a night - thank you again for checking in - I will update tommorrow after I am awake and functional after surgery. Looking forward to getting this show on the road. Again.

Keely

Tuesday - Day 2

2010-11-02T14:47:00.001-07:00

Today was productive.

The hospital is full so I was number 15 on a list of people waiting in the ER for a room upstairs. Apparently being immune comprimised gets thee a priority spot though as I'm told I will have a room tonite (as opposed to the 4 day wait that was initially anticipated) so that's a perk.

In spite of being in the ER much was still accomplished. Hematology/oncology (the folks who treat my autoimmune disease) came by and based on my blood pressure and heart findings everyone seems to agree I have relapsed.

This was not unexpected, but we all hoped I'd get more time before it happened. So it goes.

They will place a VasCath central line in my neck tomorrow and start another round of plasmapheresis to get that under control.

At this point we really don't know how much of the relapse is responsible for the gut and how much is just permenant gut damage. I haven't seen GI yet - they should be by this afternoon or tomorrow morning. Likely to start TPN again. Time will tell how much gut function I will get back and how much is just beyond repair at this point. (Or will need more time or Mayo Clinic magic to fix).

So that's today's update - some plans in place which is good.

I have decided to very stubbornly stay positive. I am confident this will work, my immune suppressant drug will kick in soon, and by December I will be home and healthy and strong and the boys will continue to thrive and only good things are in store for our family from here on out. It's time for good stuff and I and going to simply expect no less from here out.

I have faith that this will go well and things are getting better.

Tuesday - Day 2

2010-11-02T14:47:00.000-07:00

Well it was a brief reprive.

2010-11-01T18:26:00.001-07:00

I'm going to stubbornly look at the bright side.

I was home for a week. I got a wonderful week of snuggles, stories, and Halloween fun with my monsters.

Unfortunately the J-Tube feeding tube trial is officially a failure. As the week went on I was able to get less and less formula in, and felt worse and worse and used more and more morphine. Today it became clear that it was time to throw in the towel and come back to the hospital for admission and TPN.

I am now comfortably hanging out in the ER, waiting on a bed upstairs.

Tomorrow I expect they will place a central line (either a PICC or a port) and restart TPN and get the process of home TPN started.

I also expect this will be sufficient to get the Mayo Clinic referral bumped up in priority.

It is a wrench - lost wages from time off, gas bills for driving back and forth and the emotional toll of being apart again all pile up.

But this is where I need to be.

Looking forward to not hurting and wanting to barf most of the time at least.

We will get through this again.

Well it was a brief reprive.

2010-11-01T18:26:00.000-07:00

Wednesday the 27th

2010-10-27T11:00:00.000-07:00

Well I am home, so that's a start.

I was officially discharged on Monday, and it is WONDERFUL to be at home with my boys.

I'm trying hard not to be discouraged but my being home is not a reflection of my being 'better' but rather of there being nothing more they can do for me in the hospital.

I am getting fed through the Jtube which is great as it's nourishment. But I'm in alot of pain and needing morphine pretty much around the clock witch sucks.

We are essentially pumping food into a gut that does not work, and that causes pain. But with the morphine we're able to do it, so we will continue to do so for the time being.

I am now in waiting mode - we are waiting for approval to refer me to the Mayo Clinic - they will hopefully be able to get a handle on how to manage my gut issues better.

So that's about it - just sort of coasting at this point. Hoping things improve. preparing myself in case they dont (which will mean readmission, starting back on TPN, and up to 3 more weeks in the hospital until they can sort out the home TPN services - not to mention all the risks and worries that go with being on TPN longer term... its great short term, its scary long term).

The boys are doing fantastic which is great - this morning they decided to have a 'dance party' before school... when they decide to have a dance party Brandon will turn his piano on, and turn a song on (its a fancy electric keyboard with all the preset songs and beats in it), and then the 2 of them will dance like maniacs on the carpet for 10 minutes - we're talking full out somersaulting, jumping, spinning, twisting, dancing... they get right into it, and it's hilarious to watch! So today started with a dance party - hard to be grumpy when you start your day out like that :)

Thanks for checking in,

Keely

Friday!

2010-10-22T20:34:00.000-07:00

Well the past few days were tough.

On Tuesday I had a 'transgastric jujenal feeding tube' placed - basically they threaded a tube through a hole in my abdomen, into my stomach, then down my intestines quite a ways. By pumping formula into the tube we bypass the stomach and the first part of my intestines - neither of which works well.

Surgery went well, and Wednesday was actually a half decent day.

Wednesday evening we started pumping a formula that is very broken down (semi-elemental - for people with allergies or compromised gut function - just makes it easier to absorb) at a very slow rate (2tsp an hour).

Unfortunately yesterday was a baad day. The pain from the surgery was at it's peak, and I was on a lot of morphine all day long and it was barely doing the job.

Thankfully today went MUCH better, and I have been slowly tapering the frequency of the morphine doses, and the pain level is much better.

This afternoon I hit my 'goal' rate for the formula - 45ml/hour - and I no longer need TPN at this point so long as I continue to tolerate the tube feeding.

Since I dont need the TPN at this point and so far thigns are going well they let me come home on a pass tonite until Sunday morning!!!

I have to go back for labs on Sunday but if all is well I can go home sunday night again, and go back to the hospital Monday morning... :) If the stars line up I may be looking at a discharge Monday afternoon!

I am SO happy to be at home - the boys were so happy to see me (and I them), and snuggle and read stories...
I am getting ready to sleep in my own bed.. in a quiet room.. wihtout a sleepless roomate or nurses checking vitals all night, or alarms or chatter in the hall...

simple joys :)

Im still on morphine, but hte pain is improving, and so long as it continues to do so I will be able to stay home.

Here's hoping :)

K

Update on me

2010-10-19T17:24:00.000-07:00

Sorry it's been so long since I updated - its hard to update on my blackberry and I have no other internet access at the hospital.

I am still at the hospital - a month today.

The plasmapheresis 'fixed' up my blood pressure problems so it did do something which is great, but my gut has not rebounded and they are considering the treatments a failure on that front. Instead of better my gut has gotten worse and I've been on morphine to manage the pain which isn't ideal.

Today I went to the OR and had a Gastro-Jujenal tube placed - it's a feeding tube that skips my stomach and feeds directly into my small intestines. The hope is that by skipping my stomach (which currently doesn't work at all) and the first part of my intestines, and using a very broken down formula that is easy to absorb, we can make use of whatever gut function I have left.

If it works I could be home this weekend.

Then we will wait to see how much my gut recovers. Long term it could recover almost totally or not at all, It's anyones guess.

The other part of the plan is to send me back to Mayo Clinic. This will be a few weeks or months from now likely, but the doc here thinks it's the best move now. My disease is so very rare that there's only a couple doctors that have experience with it - luckily they are all at the Mayo Clinic which is close - so they are working on arranging that.

So tonight I am quite sore from the surgery, but they have good painkillers that I'm happy to accept.

I feel confident that this is at least going to be a good step towards getting home. Long term is still fuzzy but I am hopeful ill be home this weekend with my babies.

Monday

2010-10-11T15:52:00.001-07:00

Well it's been a while since I've updated - mostly because there has been nothing to update.
I finished my final plasmapheresis treatment today, they have gone well - boring - which is good.
Unfortunately I am not doing any better. My gut issues have progressed to the point of requiring morphine to manage the pain, and my blood pressure and heart rate issues have continued to worsen.

At this point we are now in 'wait and see' mode. The meds I am taking (azathioprine) to reign in my immune system can apparently take months to work sometimes, so they are telling me not to give up all hope that we can get things back in order again.

Because we are now simply waiting for things to change (be it for better or worse) I am pushing for a discharge. I can wait and see at home just as well.

Unfortunately it's not easy to organize all the stuff that must be organized to get a person home on IV nutrition... home nursing, bloodwork, hospital visits, central line care, pain management, and the day to day business of producing and delivering the IV nutrition itself is a logistical nightmare and I'm sure it will take some time to set up.

I will meet with the 'team' tommorrow to discuss the process and I am hopeful I can be home by next week. Or at the very least be at a hospital closer to home.

Either way will be an improvement on the current situation (I'm in the city and the rest of my family is an hour away.).

I'm trying not to get discouraged, but it's hard. I miss my family, I miss my life. Tommorrow will be better.

K

Wed Night Ramblings

2010-10-06T18:46:00.000-07:00

1. Eating is currently the most painful thing ever.
2. Morphine is amazing.
3. The nurse who brings me morphine has a heavenly glow about her.
4. It's time for sleep. Here's hoping for a decent night.

Wednesday

2010-10-06T14:36:00.000-07:00

Well the second central line went in Monday afternoon in my jugular (neck - yea). A few minor complications (of course) but it is working now.

I've had 2 rounds of plasmapheresis that were blissfully boring (yea!).

3 more treatments to go - my last is on Monday...

Now we wait.

And hope.

Monday

2010-10-04T20:26:00.000-07:00

Well today was crazy - surgery was bumped, then rescheduled then bumped until I had a semi-coherent temper tantrum and suddenly I was being wheeled down to interventional radiology. So the line is IN!! Went in without a hitch, I was pleasantly sedated, so it was all very easy.

Tomorrow is in theory plasmapheresis....

Fingers crossed.

The Night Before. Reality Bites.

2010-10-03T16:36:00.000-07:00

I lay in this hospital bed, watching the sun cast long shadows over the buildings outside and I am again struck with a rush of perspective. It happens now and again, and usually I'm good at pushing it aside, ignoring it, but tonight my defenses are down. Generally it's a "what the hell happened to our life" kind of moment. And not in the "hey we won the lottery!" Way.

My body has spent the past 2 months slowly shutting down. Antibodies building up in my bloodstream have been attacking the nerves that make a human body function at the most basic level. Nerves that make my heart beat, digestive system digest, my eyes respond to light, and a whole whack of other basic things that one does not "think" about. The stuff the rest of the world takes for granted.

Tonight I lay here, while my family lives out their daily life 100km away from me. My only link is the phone, which is hard when your child cannot talk. I lay here listening to the IV pumps (yes pumpS) pushing IV nutrition into a line that sits in my heart, keeping my body nourished until my digestive system is able to pick up the slack again. I lay here and think about tomorrow morning, when they plan to put a second line in my heart, a bigger line that will come out the side of my neck. I wonder how many 'lines' they can thread into a person's heart before it starts to get cranky from all the action. I contemplate the 'treatment' they are trying tomorrow once the new line is in place and working. Like something out of a movie, they plan ro remove my blood through one section, run it through a machine that removes the plasma (liquid part of your blood) and replace it all with someone elses plasma. I will, once done, have blood made up of many other people. For hours I will sit in the ICU as they do this and watch me to see how I respond.

The theory is that since the antibodies that are wreaking havoc on my body reside in the plasma, by replacinf mine, they will stop the process.

I contemplate the drugs that they have to put me on afterwards, to keep the antibodies from coming back. Harsh drugs. Cancer drugs. The kind of drugs that make people really sick and sometimes bald. The kind of drugs with warnings on the lables about bone marrow damage and cancer as a side effect (I am struck by the fact that most cancer drugs do indeed have Cancer listed as a side effect). And yet all I can focus on is the fleeting chance that these monster drugs might actually give me some time to feel normal, and healthy. Time to go home and squeeze in as much 'life" as I can with my family before the drugs stop working again and I find myself right back here, broken and exhausted all over again.

I think about all this and know it's the right path. I know this is the best chance I have, we have, of a little bit of 'normal' (or as close to normal as we get in these parts).

I am scared. Not of the lines, or the treatment, or the drugs though. The only thing that scares me is that it might not work. Nobody knows.

Or worse - that it will work for a very fleeting period of time. I don't know what's worse, the get better and get very sick all over again, or just stay sick and find ways to manage it.

Tonight I am trying not to think about it all, but with so much riding on tomorrow... It's hard to quiet the mind.

I'll try to update tomorrow when I have a chance. Wish us luck.

Saturday

2010-10-02T17:04:00.000-07:00

I read a quote a while ago in a book. It was along the lines of "is this how it happens? That we all go bumbling along stubbornly pretending that everything is normal until all of a sudden it isn't anymore". It's a quote that so resonates with me.
I find it fascinating how much we are able to 'normalize' in our mind, and how there inevitably comes a time where 'normal' is simply so far removed from your life that it is no longer relevant.

Today was decent. I am profoundly exhausted on account of the heart and blood pressure crapping out on me, so it was spent mostly in bed. Even sitting up at this point sends my heart rate over 160.
So today I wrote, and read and had some lovely visits with family that came by.

my heart hurts for my family as they bumble along without me and I'm helpless to do anything to help, but I know they will manage.

I miss my husband. Kids. Parents. I can't wait to get back to my life again.

Weekends in the hospital are very quiet and peaceful. Good to recoup. Monday will undoubtedly be a hard day with a line placement in the morning and plasmapheresis in the ICU in the afternoon (if the stars line up). So a few days of enforced rest are probably good.

Hoping for another restful day tomorrow.

K

Friday

2010-10-01T19:12:00.000-07:00

Well the central line didn't happen today - no time in the radiology suite I guess. Personally I'm relieved - I am still quite sore from yesterdays attempts, I'm glad for the rest.

The plan at this point is to place the line Monday morning, and do the plasma exchange that afternoon in the ICU. I will then have a second exchange on tuesday and then every other day until the following Monday.

So today was rest as will the weekend be. The TPN is working its magic and my blood sugar has been beautiful all day, which is great.

Unfortunately the antibodies have done their work on my heart - while it has managed to stay regular and healthy so far, today things went downhill and my blood pressure tanked and my heart rate shot up when I stand. It's not unexpected and honestly we were surprised it took this long to be affected - it means I am officially in a full relapse. So I'm looking forward to starting the plasmapheresis.

So it goes.

The weekend will hopefully be quiet and restful.

K

Update

2010-09-30T22:46:00.000-07:00

For the time being, this blog will be less about the boys, and more about keeping family and friends updated on my (moms) condition while I am in the hospital.

I have been here for 9 days now, and look ro have another 2 weeks to go at this point.

It's been a rough few days, but we are making (slow) progress.

The high dose prednisone they tried for the first week did nothing at all so on Wed it was decided that we needed to do 2 things - keep me from starving (my gut is not working at all) and try a different treatment approach.

So on Wed afternoon I had a PICC line placed in my arm (large IV that goes directly to the heart) and today they started running something called TPN (total parenteral nutrition) - essentially they are feeding me through my IV rather than my gut - I should start feeling stronger pretty fast.

That went very well - the picc line went in very easily which I was relieved with as the last time they tried to put a picc line in was a nightmare. My blood vessels do NOT like being poked and in the past any time they try to place lines the vessels clamp shut and they cannot. So the PICC placement was a huge relief.

Today the second half of the plan was attempted - they are going to do a treatment called plasmapheresis, where they run my blood through a machine to clean out all the antibodies that are attacking my nerves.
To do this they need to place another line. They tried to place the line in my neck today (picture a big IV in the neck - ick) and my blood vessels lived up to their reputation this time. The docs spent an hour trying to get the line in. Much cursing was involved. After all the work and frustration they had to give up, and I have no line.

They were dumfounded. But I believe they believe me now when I tell them my veins are stubborn.

So tomorrow I will go down to Interventional Radiology so they can try to place a different kind of line under an xray machine. I have asked if they can give me consious sedation/drug me up and they sound as though they will...

Tonite I'm sore, tired, and looking forward to feeling better from the tpn at least. Also looking forward to getting this treatment over with so I can get to feeling better.

I have the sweetest quiet little old french lady for a roomate now so hopefully she sleeps well.

Well that's tonite... I'll try to update regularly while I'm here as it's easier for family to check in.

Trying to stay positive.

K

Frustrated

2010-09-27T14:21:00.000-07:00

I'll start with the good: the boys are fantastic, thriving at school and growing like weeds. For that we're thankful.

I unfortunately am not.

This spring I was diagnosed with Autoimmune Autonomic Ganglionopathy, an extremely rare autoimmune disease that attacks the autonomic nerves (the nerves that control the heart, breathing, gut, eyes, etc). Treatment worked initially but I relapsed in August and have been inpatient for a week now trying to get things under control.
High dose steroids do not seem to be working and the options get progressively crummier, so we're sorting out just what kind of 'crummy' we're willing to run with at this point.

I wish I had something profound and meaningful to say but right now I'm pissed off, starving, frustrated with my body, and missing my family.

I know I'll make peace with this and find a new happy medium but right now the 'magic train ride' that one gets whisked off on when they are inpatient (that one your expected to bump along quietly on, agreeing with and complying with every doc/nurse that talks to you, lest you be labled 'difficult') has taken it's toll and if I didn't know I would simply be back here in 2 days worse than when I came in, I'd likely march out the door myself.

Hopefully tomorrow will find me in a more positive headspace. For now I'm gonna put my headphones on, watch more food network and mope for a while.

K

Time

2010-09-16T12:36:00.000-07:00

Well time has managed to once again slip away on me.

The boys are happily at school.

Tyler went off to his first day of kindergarden professing excitement at finally being able to learn about nuclear physics.

Brandon asked me to program 'Carla (his school worker) is a big bug' into his communication device.

The boys are doing fantastic.

I am falling apart again, and at this point skirting another hospital admission on account of a relapse of the autoimmune stuff, but hoping to continue skirting it and levelling off soon. Time will tell.

It's always time that is the deciding factor.

Keeping on keeping on.

The job hunt.

2010-08-24T14:16:00.000-07:00

The boys are doing great.

Enough about them.

I'm on the job hunt. I am 3 courses away from graduating university - since the 3 year bachelor of arts degree I will be getting has taken me 10 years thus far, I anticipate my graduation to be sometime around 2013.

In the meantime I have discovered that one cannot actually pay their mortgage with smiles, and no matter how much my kids like bologna, eventually even they tire of eating it.

So I'm on the hunt for employment.

Here's the dilemma: Tyler starts kindergarden, and for this year it is on Day 1, 3 and 5 of a rotating 6 day school schedule. Now who the hell decided on a rotating 6 day school schedule? I think school administrators are just looking for ways to skrew with parents now.

Add to that the fact that I get IVIG treatments every 2nd tuesday and spend the next 3 days feeling about as chipper as a drugged up sloth with the flu.

So... my availability for September is as follows: the first Monday and Wednesday (or 'Wodensday' if you prefer to give the old Norse God and Wednesday's namesake it's due credit) of the month, the third Wednesday of the month, and *maybe* the last Friday.

I'm not thinking my potential employers will leap at that...

So the job hunt continues. I've been hounding a few newspaper editors hoping one of them will mistake me for an actual writer with some actual talent, or maybe just pity me enough to throw money at me for writing jibberish.
Not sure how well that retirement plan will work.

In the meantime I am considering selling a kidney. Though Im not sure many people would want it. I'm sure it's a lovely shade of pink.... would go well on a mantle? Im dissapointed that ebay explicitly states in its terms of use that selling body parts or organs is forbidden... not sure how else to break into that market.

Well - time to stop rambling - off to try my hand at the loom.

K

Wordless Wedenesday

2010-08-11T06:18:00.001-07:00

Enough Said.

Today

2010-08-08T19:16:00.001-07:00

Today we went to the beach.

Today we ate sandwitches with real sand in them, and didn't mind.

Today we put a lifejacket on Tyler and let him splash and play and chase his cousin Charlie in the water for 2 full hours.

Today we helped Brandon bury his teenage cousin and shaped the sand into a mermaid (thanks Kyle!).

Today I cleaned a full inch of sand out of the bottom of my bathtub at the end of the day.

Today we put 2 very tuckered little boys to bed.

Today we all got a little darker skin, and a little sunnier dispositions.

Tonight we went for a walk past the house that was burnt in the deadly fire up the street on Friday.

Tonight we washed some of the firefighter gear dad wore to the fire Friday morning.

Tonight we are goign to bed comfortable that we double checked all our smoke detectors.

Tonight we're counting our blessings, and are thankful everyone under our roof will be safe in bed for one more night.

Tonight we're feeling lucky, and remembering that EVERYTHING can change in an instant.

Looking forward to more todays (and hopefully no more Fridays).

Goodnight.

Today's Lessons:

2010-08-03T18:33:00.001-07:00

1. Tyler learned what 'dense' means (as in dense meat). Try explaining 'dense' to a 5 year old.

2. 'Accidentally' dumping 1/2 a bottle of kids shampoo into the bathwater is ALOT OF FUN.

3. It is going to cost over $4000 to feed my 7 year old for the next 3 months. (Thank goodness for insurance)

4. Typing 2204355 into google and clicking the 'I feel lucky' button produces a strange man singing into chicken drumsticks set on a psychadellic rainbow background that makes my children laugh until they cry no matter how many times I play it.

5. If you forget that the Seating Clinic delivery guy is supposed to come pick up a base at 10am, and you ignore the stranger at the door hoping he will just go away.. he wont. He will instead go back to his van and call you several times (calls you will ignore), then wander around your house, hoping you left the aforementioned base outside somewhere for him to pick up... he will do this until he happens to see you and your 2 kids hanging out in the living room through the front window (at which point it will suddenly dawn on you that he's not a murderer - he's the delivery guy you were supposed to be expecting)... You will feel like a moron when you go and try to pretend you didn't hear the doorbell 5 times and the telephone 3 times and 'honestly' only realised he was there when you saw him through the window... He will smile and pretend he buys it. But you both know you're just a big chicken who doesn't open the door to strange men you aren't expecting (or have forgotten to expect). You won't really care that you looked like a fool though.

6. When you take 30 GREAT pictures of your kids playing under the big beach umbrella at the bottom of the wheelchair ramp, it is for naught if you have not put the memory card in your camera first.

7. 5 year olds can actually eat 1/2 a large watermelon all to themselves. 7 year olds can eat the other half.

8. You are a lucky woman when you can email your child's pediatritian and request 6 perscriptions/letters for insurance companies, charities, and non-profits, and he responds within a few hours with 'we'll try to get them out this week to you!'.

9. The 5 year old will eat ANYTHING if it comes out of our garden. The child HATES onions with a passion but he watched me pick one out of the garden and decided it was his favorite food ever - and he did indeed eat it.

10. When it's brutally hot out the cat will sprawl out in the kitchen sink just for the feel of the cool metal. The children will LOVE this, and will attempt to use the opportunity to offer said cat a bath. The cat will NOT love this.

11. Letting the kids spend 1 hour in the bathtub before bed is the maker of miracles I wish I knew about years ago.

12. 3 queen sized sheets, a camo throw rug, 5 utility clamps, a few chairs, and a whole wack of pillows and stuffed bears can transform any living room into a fort of epic proportions - and will bring mom HOURS of peace (well 'peace' is a relative term in this house...)

13. Setting up bird feeders within 'cat-leaping distance' of the deck rail is either a wonderful source of entertainment or a cruel cruel joke...

14. At the end of the day - when the floors are washed, the fans are on full blast, the laundry is folded and the kids are healthy and sleeping in their beds... the house is quiet... It's a little piece of paradise...

every night. :)

Quick one today...

2010-08-01T20:04:00.001-07:00

Today's entry will be short on account of a rather deep cut I managed to give my poor finger while peeling/slicing the 50 odd pounds of apples we got from neighbors today (yay!!). It's amazing how much a sore finger impacts your life when you are a computer junkie...

Anyways - rough day here - the boys were up at 630am, rearing to go. They were up late last night - so all around not enough sleep. It's been HOT here (like 35C - 95F hot) and I think it has finally caught up to Brandon.

His movements are worse than I have seen in a LONG time in spite of an increase in his medication this week. For the medical junkies - his dystonia is quite bad - lots of posturing at night etc, which im sure is contributing to his being tired. During the day he is stubborn enough to insist on walking around the house, but falls constantly because of the ataxia which is also worse than it has been in a long time. He has hurt himself countless time this weekend.

It's days like this I just get mad at it all. It's not fair that he has to weigh walking against getting hurt. :(

We have been lucky so far - he is rubbery and hasn't broken anything yet. But we all know it's just a matter of time until he breaks a bone. It's impossible to tell him not to walk, but at the same time, we know it will hurt him.

~sigh~

Life just sucks sometimes.

To ice the cake we had to bow out of a bonfire tonight that both boys were REALLY looking forward to. Brandon is just too tired. By dinner time he was a whiny grumpy mess. So we called off the late night and went to bed early.

Again. ~sigh~

I was looking forward to just doing something 'normal' as a family. Staying up late on a summer night, hanging out around a bonfire with good friends, marshmallows and hot dogs. It's hard to admit when normal is out of reach.

Alright - pity party over.

At the end of the day nobody is actively sick, and I have a freezer full of apples, so I really can't complain.

On that note I believe I will go indulge in the last chocolate chip cookie.

Goodnight friends.

Dinner.

2010-07-31T08:30:00.000-07:00

Last night's dinner: Navratan Kormi, and Basmati Rice

Ingredients:

-1/3 cup Cashews chopped
-1 onion diced or grated
-1/2 tsp garlic minced
-1/2 tsp ginger powder (or fresh)
-1 8oz can of tomato sauce
-1 tsp cayanne (optional - we used paprika for less heat)
-1/2 tsp tumeric
-2 tsp coriander
-1 tsp garam masala (spice blend - their all a little different - stores carry generic blends, but your best bet is to find a genuine Indian resturaunt that sells jars of their 'house blend' - this will give you the most authentic flavor)
-1 cup water
-1/2 cup carrots chopped
-1/2 cup green peppers chopped
-1/2 cup corn (i used canned - worked well)
-1/2 cup peas (also used canned - worked well)
-1 cup chopped potato (I used a leftover baked potato, just chopped it up)
-1/4 cup milk
-1/4 cup heavy cream (I used sour cream as it's all I had - it was fine though I dont know I would use it again - i think ill opt for plain yogurt next time)

Instructions:

1: Fry the cashews in 1 tbsp oil - set aside.

2: Fry the onion in same pan until softened. Add garlic and ginger and fry for 1 minute

3: Add the tomato sauce, spices, water, and veggies. Bring to a boil and simmer for at least 10 minutes if your using already cooked potatos - if the potatoes are raw simmer for 20 minutes or so until they are soft.

4: Add the milks and cashews and boil for 2-3 minutes, salt to taste.

Serve over Basmati rice and enjoy!

This was a big hit here - I *love* Indian food, and have been looking for a decent recipe for Navratan for months. While I'm not convinced this is precisely the taste I'm going for (the local Indian resturaunt serves a much creamier and less tomatoey version - I will work on perfecting it), it is awesome nonetheless! :)

It also blended up well for Brandon's feeding tube feed!

Finding Your Child's Inner Artist

2010-07-29T17:43:00.001-07:00

Around here we like to paint.

When Brandon started showing some passion for it, we didn't go halfway - we got him an easle, mounted canvases, acrylic paints, a huge set of brushes, palettes and a monsterous drop cloth for the table. He has been painting since he was 2. Many a family member has an original 'Brandon' hanging in their home.

As of late, Tyler has joined the foray - he too loves to paint, and after inheriting my grandmothers easle a few years ago, the two of them go to town together now. Painting days are much anticipated in these parts!

So some tips for encouraging your kids to produce works of art that you would want on your wall?

1. Get real paints. Go to a craft store and purchase a set of acrylic paints. Don't get water color (too dependant on the right amount of water - small children will struggle and it just ends up washed out), and do NOT get oil (just don't). Don't get the cheapo kiddie paints, don't get the prefilled palettes of paints - get the set of acrylic tubes - they don't have to be high end - you can get a full set of acrylic paints for 15$ if you hunt around - but do get REAL acrylic paints. This will give you art you want to keep and not just washed out messes.

2. Get real canvas. It's cheap. REALLY cheap. check the dollar store - they often have different sized mounted canvases for (you guessed it) $1. Check Wal-Mart - you can get big canvases for a few dollars (and sometimes BIG is cool - you will be surprised what a kiddo will do with a huge white canvas and some paints!). Even Michaels and other craft stores will have reasonably priced mounted canvases. This doesn't have to be complicated - you do not have to mount the canvas yourself or prime it etc, just take it home and paint!

3. Don't coach. As much as you will want to tell your child what to paint or how to paint, fight the urge. Show them how to mix colors, show them how to add a bit of water to their brush, and tell them to cover all the white on the canvas... then resist the urge to tell them anything... let this be THEIR work, not their depiction of what you think they should do. No rules - if they want to paint with their ear or big toe - let them. This is where creativity gets cool!!

4. Don't worry about the mess!! Buy a bunch of cheap vinyl tableclothes at the dollar store, and drape EVERYTHING so you dont have to think about it... give your kids a set of designated painting clothes (acrylic paint will NOT come out of clothing), cover your table and chairs and floor with the tablecloths, and let them go to town. Limit the amount of water in their 'rinse' cups (we use shot glasses here - perfect size for little hands, and if it spills, it's never alot of water) and you're set!

5. Write their name and the date on the back of the painting - enjoy it!

Some people frame theirs - we buy the canvas mounted on wood frames and just hang them as they are, there's no right or wrong way to enjoy your child's art - just find somewhere you want to see it often and hang it up! Your child will love that their art is appreciated, and the painting experience will offer up hours of entertainment (not to mention physio and OT for the special needs sect!)!

Lastly - once the paints are set up, and the kids are going to work... take a break, and indulge in the quiet!

(well - until someone drops a shot glass of water, eats the cadmium yellow paint or sticks a paintbrush in his brothers ear...)

As a safety disclaimer - acrylic paints are not non-toxic - so do not allow your children to paint unattended if they are prone to putting things in their mouth. If they are major 'mouthers' you will likely want to avoid this activity altogether and look at some of Crayola's kid friendly (and non-toxic) paint products - their finger paints are FANTASTIC for the under 3 crew, and wash off everything with just water - so may be a better option for children who may eat their medium - ingested acrylic paints can be downright dangerous - so supervise and don't risk it with kids prone to eating stuff.

Wordless Wednesday

2010-07-28T10:40:00.000-07:00

Vocabulary Homework

2010-07-27T17:29:00.000-07:00

Today Tyler asked me what 'precise' means.
Yesterday he wanted to know what 'ensure' means.

Go ahead - try to come up with a 5-year-old-friendly definition for those... I dare ya.

This evening he announced that I was being 'dictatorish' (he was right - I was).

That is all.

Bumbling Along

2010-07-26T13:22:00.000-07:00

Much of our days are spent outdoors this time of year. The long winters make for 'yard junkies' come summer.
Since we were fortunate enough to luck into a massive yard, we have spent the better part of 2 years getting it established as our 'paradise'. The end result is a very blurry line between 'outside' and 'inside' come the warm months... most of our meals happen on our deck (bringing me one step closer to my ultimate dream of a 'hose-down kitchen')... the boys live in their play structure and pool... and they have no concept that the gravel driveway is for anything more than the exclusive use of their tonka trucks.

The other aspect that the boys are fully involved in is our garden.

It spans the entire yard - we have a large 15'X15' plot in the corner of the front yard with rows of potatoes, squash, onions, beans and the like. We have pots... everywhere... pots on the steps, pots on the deck, pots on the walkway, pots in the driveway, in the greenhouse... pots of Tomatoes, peas, tomatos, beans, tomatos, squash, cucumbers, more tomatos, flowers, roses, and (you guessed it) tomatos... did I mention the tomatos?

The neighbors have jokingly called us the tomato ranchers... between what we planted, and the seedlings we 'adopted' from our neighbors who ran out of room, we have over 20 tomato plants.

The boys both helped prepare the plot and the pots, plant the seeds, transplant the seedlings, pull the weeds, and are now getting into helping pick the potatos and beans and onions that have been ripening (a tast made MUCH more appealing when they realised that the garden is FULL of worms, slugs, centipedes and spiders)! Eating food you have grown yourself is such a treat!

Our days are spent wandering from the house to the deck to the pool...
The boys have found many different ways to put their 9$ wal mart special blow-up pool to good use..
Though I had to break it to Tyler that no, we cannot stock it with trout... He understood though - he did afterall point out that the fishooks would pop the pool anyways.
Regardless - troutless as it is - they enjoy it just the same. Today the water ended up black with mud...

I would be remiss to point out that mom too loves the yard. While I don't necessarily get too gung ho about the pool (though that may change since I've discovered Tamara's blog and her families fantastic use of their small pool I'm sure laps lie in our future too), there is a simple, carefree bliss that goes with sitting on the deck, in a patch of shade, with a good book and a glass of orange juice.

Life continues to be good.

K

A Perfectly Ordinary Day

2010-07-25T17:03:00.001-07:00

Every now and then they sneak up on us...

Days where the lines between this bizarre, challenging, scary, yet delightfully unique life we are leading and that universally percieved 'normal' it always seems everyone else is leading blurs.

A day where all the 'scary' of Brandon's disease fades into the background, and from the moment we wake up to the time we settle the boys into bed, everything seems perfectly as it should be.

Today was such a day for us.

It was a day of lounging in the sunshine on the deck, playing in the grass, the inflatable pool, chasing the cat, capturing fishflies and dragonflies and slugs and worms. It was the dinner time BBQ with family, fights with cousins over who gets the toy sword and who gets the cap gun. It was music, and highway driving with the windows down, counting motorbikes on the way. It was wandering out in the water as far as we dared at the beach, sand in our shoes, scrapes and bruises. It was heat (oh the heat!), beach umbrellas, cherry freezies, and tonka trucks in the mud.
It was quiet time at the table with crayons, and 'loud time' downstairs with the aforementioned cousins. It was fresh muffins and apple juice in bed, settled in for 'movie night'...

From start to finish, it was all just so 'normal'.

We get so little 'normal' that when it sneaks up on us, it's such a treat.

Wishing you and yours many Ordinary Days of your own. May you recognize and enjoy them when they come.

K

As Promised...

2010-07-24T11:26:00.000-07:00

Some long awaited pictures...

I'll let the boys do most of the talking for this morning's escapades...

This morning we changed the whole 'pool' thing up a bit... Turns out the slide doubles as a fantastic water park...

Much fun was had by all...

Brandon ADORES water... Between the relief from the heat (and do we have heat this week!) and the general 'fun' factor - he is always game for a dip!

Tyler pretty much throws his heart into anything and everything he does... water included.

More of the same...

The facial expressions are awesome :)

Tylers 'shiner'... if you ask him what happened he will plainly inform you that "my brother threw and ambulance at me"... to which Brandon adamantly responds that Tyler hurt his arm first by throwing a zamboni at him... (He frantically signs 'tyler' 'throw' 'cleaning truck' (his sign for their toy zamboni) 'wrist' 'hurt'... for a kid that can't talk this boy has plenty to say!).
Sadly I witnessed the whole thing and they are indeed telling the truth.

This about sums up the morning...

As I said earlier - life is good.

K

Life is Good!

2010-07-24T09:02:00.000-07:00

Pictures to come!

The boys are doing GREAT!

Brandon is quite tired these days - I suspect it's the heat wearing him down - but he is healthy and in good spirits, so we have little to complain about.

With a forcast full of sunshine and heat, we plan on spending our days on the deck and in the yard.

Life is good!

K

Summer!

2010-07-01T16:45:00.000-07:00

Everyone is healthy.

Everyone is doing well.

Everyone is adjusting to the endless swarm of mosquitos.

As for the rest, I'll let the pictures do the talking!

Mr. Drama himself.... apparently the slide is not so easy to go down when you're in wet shorts...

Cannon Ball!

More showing off...

Brandon too enjoyed the pool very much...

I swear this boy has a million expressions...

Pensive moment (actually he was looking at a bug he had just captured...)

Brandon's cannonball!

So Confused.

2010-06-25T07:34:00.000-07:00

Well it's been an odd week.

Brandon has refused to go to school all week. He insists his chest and throat hurt, though he's usually smiling happily when he tells us this.

On day 1 we thought he was just trying to weasel out of school so the deal was if he didnt go to school, he had to go to bed all day.

Anyone that knows Brandon, knows that laying in bed all day is NOT in his nature.

He chose bed. and stayed there. all day.
And all wedensday. And yesterday. and is back there today.

He is no longer there by a house rule, but is there by choice. He gets up, eats breakfast, signs 'bed' and head to his room.

He lies in bed watching movies, reading books, watching his ipod... he is COMPLETELY happy... even got a serious case of hte giggle last night...

he's napping in teh afternoons, sleeping alot at night...

He's beat.

We saw the pediatrician on Wed, he checked out 'ok' and they tested him for mono which was negative.
Yesterday we went back to the hospital for metabolic bloodwork as something is obviously just not right.
That bloodwork has almost all come back normal - were waiting on one last test, but i dont expect it to be abnormal.

At this point the theory is its a virus that just knocked the stuffing out of him.

We are all on edge of course, and hoping to get our boy back soon.

Bumpy Roads

2010-06-23T18:39:00.000-07:00

Brandon is struggling. He has stayed home from school this week because he insists his chest and throat hurt. When told 'if are too sick for school, you have to stay in bed all day' he happily goes to bed and stays there... all day long. 2 days in a row.
Something is clearly up.

We saw the doctor this afternoon who reassured us that he is not actively 'sick' sick... but the worry at this point is Mono. We're waiting on the bloodwork.

What a way to start off the summer.

On the up side, he is very happy... just very very tired.

Everyone is well again

2010-06-21T13:04:00.000-07:00

Well we muddled through the worst of the virus last week and the boys are both on the up swing! (and with no hospital stay required to boot!)

Brandon came through this fabulously - we were pretty nervous as the last throat/fever type virus he had cause some pretty severe neurological issues/progression so we were all on edge over here - but he did just fine!

Yesterday was spent in the sunshine in the yard, fighting off mosquitos and june bugs... exactly what fathers day is supposed to be :)

Onward and upward!

K

Sick House

2010-06-16T05:52:00.001-07:00

Well we're still battling this virus. Brandon was hot again last night, and Tyler woke up hot and barfing with a sore throat.
I'm hoping I can get Tyler to keep down some motrin as I suspect once the fever comes down he will stop barfing - and we can avoid an IV.
His sugar is highish at the moment so thats good at least - better than low.

Brandon seems to be in good spirits this morning though so hopefully he has rounded the corner on this one.

Poor Tyler - it was his 'welcome to kindergarden' day today too - he LOVES wedensdays for this.

**sigh**

off to hit the coffee. hard.

On the upswing we hope

2010-06-14T07:05:00.001-07:00

Brandon is doing better this morning - after a long night of high fevers, he is a bit cooler today, and even ate and drank a bit this morning.
He is currently fighting with his brother over cars on the living room floor - I will take that as a good sign.

Breathing a tentative sigh of relief.

There's the rhino

2010-06-13T12:16:00.001-07:00

Brandon is sick.

High fever, and general crumminess.

First sunny day all week. :(

Hoping its a quick one.

A note to those new to mito-land

2010-06-08T18:56:00.000-07:00

I shared this on a support group/forum the other day with a mom who recently found out her son has mito... I've had a few folks suggest I post it on my blog - so here it is.

(Mom and Auntie Patti I suggest you guys skip this one - or grab your kleenex now...)

It is a strange thing to feel relief when your child is diagnosed with a terrible disease. But relief is indeed the emotion we had. We've seen both sides of the coin - the awful world of 'undiagnosed' - knowing something awful is wrong, and not having a clue what it was... and the awful world of 'mito'... still awful, but slightly less in my opinion.

Having a name for the monster does indeed help.

You're in for a roller coaster - as much as this ends one chapter of the journey, it also marks the beginning of a whole new one... not more or less terrible/scary... but different. You will now spend the coming months learning how to 'be ok' with the fact that things will get worse, and you will not know exactly 'what' is going to get worse until it does... the uncertainty does not get better, but it does get bearable.

You'll learn how to 'be ok' with discussing this horrible disease... you will reach a place where you can quite plainly explain that your child has this condition, and it will get worse, and there is really nothing that can be done (yet!) to stop it... people will be horrified that you can talk about it without being a total mess... (and I promise - with time, you will be able to talk about it without being a total mess!! it takes time, but you will get there).

you'll learn how to 'be ok' with the fact that your child's life (and yours!) is now going to be vastly different than most... and it's just that - not better, not worse, just very very different... you will find joy in things most people dont notice... you will lose sleep over things most people dont even think about... you will cry (both happy and sad tears) over things most people would never comprehend...

You don't know it yet, but your entire world, and everything you thought was important 'before' has been fundamentally changed. Nothing will ever be the same...

But I promise, with time, patience, and support - you and your family will get to a place where its 'ok'... you may not 'beat' mito, but you absolutely will grow from it, in ways you cant even imagine...

Big hugs...

Be kind to yourself... be patient with your spouse - he will likely process all this in a completely different, incompatable way than you, and it will upset you when he muddles through it differently - but its just that - different - no more or less right... allow him to get through it how he needs to, and ask him to allow you to get through it your way... The same goes for all your family...

Be prepared to lose friends. And be prepared to find amazing friends in old 'aquaintences' you never expected. Be prepared to be let down by people you believed would be there no matter what, and be ready to be surprised by the ones you didnt.

Learn how to ask for help - and do it specifically. Come up with a list of things that are difficult when things get bad (laundry, cooking, etc) and ask friends and family to help out in those areas when things are rough... People WANT to help, but they will always come to you and say 'what can i do' and at a crisis point you will not be able to tell them. So tell them ahead of time. Tell them when things are bad you really need someone to come clean the kitchen and throw some laundry in, or deliver a meal or two... help them help you.

These are all the things I wish someone had shared with me when we started this journey - we have had to learn them on the fly instead... we're getting there - but every year brings new challenges, new bombshells, and new lessons... and new joys, and achievements.

It will be 'ok'.

It will never be the same, but it will be 'ok'.

It has to be 'ok'.

As of tonight, we're 'ok'. Brandon had a fantastic day at school, Tyler is doing great, we had a wonderful evening full of loud thunderstorms and good food (waffle sandwitches for the boys - their favorite!)... life is good.

K

Good Days

2010-06-07T11:44:00.001-07:00

Today I'll let the pictures do the talking...

Life is good this weekend!

Ahhh!

2010-06-05T09:12:00.001-07:00

This morning dad got up and fed Tyler an oreo straw with milk.

Then he left to go fishing for the day.

Mom now has a seriously hopped up 5 year old on her hands.

Tyler + chocolate = insanity...

add in 7am and it's a bad bad mix.

It's all compounded by the fact that its cold and rainy outside - so I can't even kick them out into the yard!

Is it wrong to have wine at 10am?

Let's not be rash...

2010-06-02T18:31:00.001-07:00

Not much new to report today... which is wonderful.

Tyler spent the afternoon/evening incorporating the word 'rash' into his ongoing chatter...

"Now mom - let's not be rash about dinner"
"my dumptrucks name is 'rashy' because he makes rash decisions and does rash things"

Where, you ask, did the 5 year old pick this up?

All I can say is he had his once a week 'prekindergarden' class this afternoon.

Last week, when he came home from his 'prekindergarden' class, after dinner he announced that "Dad's garage is a dictatorship you know mom, and dad's tools are the dictators"....

I kid you not.

quite the prekindergarden class I say.....

stay tuned.

The glass is half full today.

2010-06-01T15:06:00.000-07:00

Well today wasnt unexpected.

I went in for my IVIG treatment, and cardio appt, knowing that things have progressively worsened the past few weeks. I've just felt lousier and lousier every few days.

Cardio took one look at my numbers (BP, heart rate, etc) and considers this a 'relapse' of the AAG.

I start the IVIG regimen on Day 1 today - high dose IVIG every day this week, followed by a more intense regular schedule after (probably every 10 days or so) until October.

It's goign to be a long week, and a long summer.

The good news is - we know whats wrong, we know how to fix it, and in a week I should start feeling noticably better.

Those are pretty big 'glass half full' things.

To set the tone for the day, I was just looking out my front window at my nice green lawn COMPLETLEY covered in dandilion 'puffs' (they have all gone to seed), thinking how gross it looked, and Tyler stood beside me and announced "wow mom, we have a whole yard full of 'wish blossoms'! Thats alot of wishes to come true!"

Thats my boy.

We're 'OK'

2010-05-31T18:13:00.001-07:00

This has been on my mind alot lately...

Maybe it's the influx of comments lately, the huge amount of family support we have recieved, the long stretch of 'healthy' Brandon has enjoyed (which is equally awesome and difficult - awesome for obvious reasons, difficult because with mito it is always temporary, and we are always waiting anxiously for that rhinocerous around the corner...

also difficult because it gives us a tiny peek into how 'the rest of you' live, and how hugely different our lives will always be)...

I'm often faced with a variety of comments parents in our position are faced wtih - 'how do you do it?', 'you're so strong!', and the like. While well meaning if I can impress upon folks not living this life one thing, let it be that you should NEVER ask a mother in my position how they do it, or comment on their strength. Just don't.

In the end it's because we're not strong, and truthfully we dont know how we do it. Like every other parent out there, we're just flying by the seat of our pants, trying to have some fun, and hoping we dont skrew up too badly.

A dear friend and I talked recently about our boys who both have their challenges, both genetic, both incurable, and both with very uncertain and scary futures.

We shared a similar sentiment when faced with the idea of 'fixing' our children, one I have talked to many other mothers of children with genetic disorders about, and it turns out it's not uncommon.

While I would love nothing more than to see Brandon 'cured', I recognize that is not going to happen. We are not going to cure mito... that would be like saying we're going to cure blond hair, or we're going to cure the fact that we have a pancreas. Mito is not just a virus or cancerous growth needing to be fixed or removed...

Mito IS Brandon.

Every cell, every organ, every ounce of his entire body is genetically programmed to have mito.

To get rid of the mito, would literally mean to get rid of Brandon.

I absolutely have hope that we will find treatments, and medications to improve the quality of his life... that we will find ways to restore the organs that have suffered damage, and that we will be able to prolong and enhance his life...

But how can I hope for a cure? How can I hope to completely, fundamentally change my child at the absolute most basic biological level? That is what a true 'cure' would be... fundamental genetic reprogramming...

Like it or not... if we want Brandon, mito is part of the package... To get rid of the mito would be akin to deciding to 'trade him in' for a new boy, a less broken boy... not something any of us are lining up to do.

Wrapping my head around this concept has gone a very long way to help me accept this path we're on....

It certainly wont stop me from persuing more effective treatments, therapies, medications, and suppliments....

But acknowledging that the mito is a part of Brandon as much as his soft brown hair, dusty blue eyes, and killer smile, sure makes me hate it a little less.... I hate what it does, but I cannot hate something so fundamentally Brandon.

And thus concludes my philisophical ramblings of the day.

Spring!

2010-05-31T07:55:00.001-07:00

We are enjoying the spring time here!

The boys are doing well, they both muddled through a spring cold fairly efficiently, and are busy making full use of our muddy yard.

The cat of course had to throw a wrench into things and got herself run over by a car... dislocated sternum, and lots of scrapes and bruises, and of course the requisite vet bill... but all in all she is bouncing back pretty well.

In light of the last few months of 'health crisis', we decided Dave needed a new job as his current position requires travel up north for the vast majority of the summer/fall, and we need him home.

So today is his last day of work with the lodges, and in 2 weeks he will start his new job as a supervisor... at this point that is all we really know about the job... it's a government position (woohoo! great benifits! how lame is it that the first thing I did was read up on their health benifits??), and he will indeed be supervising... beyond that it's a mystery...

But he's looking forward to it, I'm looking forward to having him home all summer... In our 7 years of marriage, this will be the first summer I have had him at home!

So thats about it at our end... pretty boring all things considered... we like boring!

K

7 weeks or a lifetime?

2010-05-21T15:36:00.000-07:00

Well this time around 'no news' wasn't good news.

It's been a pretty crazy few months in our house.

Let me start by saying the boys are doing FANTASTIC... Both boys are thriving... For that we're thrilled.

In April things hit a crisis point for me (mom). I haven't mentioned alot about my own health challenges on here, but as of mid-april, they came to a head and were no longer 'ignorable'.

After Brandon was born I developed severe autonomic dysfunction - my blood pressure, heart rate, digestive system and basically every 'system' that functions automatically in my body stopped working properly.

With medication and regular monitoring I was able to stay somewhat functional but have been disabled for the most part since that time. By December last year I was using a wheelchair for long walks etc.

This past winter my gut pretty much shut down completely.

I lost 30lbs in a few months (and believe me I didnt have 30lbs to lose).

Mid April I finally wound up at the ER in the city weighing 95lbs, with a blood sugar of 1.6 (28.8 in US units). I was good and broken.

For the past year the diagnosis has been 'Autoimmune Autonomic Ganglionopathy' - a condition where my own immune system attacks the autonomic nerves. Untreated, it's progressive and relentless. There is a treatment - IVIG - an IV solution made up of immunoglobulins from thousands of donors - but it is very expensive, and considered experimental for my condition, so it was taking a long time to get a trial approved.

The up side to ending up critically ill in the hospital was I was able to get a trial set up and running very fast. It came down to them wanting to place a surgical feeding tube, or start TPN (IV nutrition), and they all agreed it made sense to try the IVIG before going that drastic route.

It was a shot in the dark - they had no idea if it would work, and if it did, they had no idea how well or how fast.

They didnt know what dose to give me (so they gave me a massive one), or how often (so their doing it every 3 weeks now). But I had some awesome doctors who were willing to give it a whirl.

Then the cool part happened.

It worked.

After 7 years of being so sick, a few glass bottles of IVIG, a bit of time and rest, and one day my blood pressure started going up... stopped dropping when I stood, my heart rate stabalized, my gut started working...

I was inpatient for 3 weeks... 3 long weeks... and then I got to go home... better than when i went in... it was amazing.

It's been slow, but the recovery has been steady... Ive been successfully weaning off the multitude of medications I was on to keep my body functioning...

Every day I am a bit stronger, I have more energy, I'm less fatigued....

It's been an amazing journey, and while its frustrating it took so long to get to this point - now that I'm on my way to better (after being told for years 'better' would never happen) I am just thrilled....

Life is good.

Big News!

2010-04-02T13:07:00.000-07:00

It's been too long since I updated!

The boys are doing great... both are healthy, happy and enjoying spring break.

Things at our end are comfortably calm, and we're hopeful they will stay that way.

The big news of the week is MitoCanada!

Last fall, myself along with several other families across the country set out to establish a charity in Canada serving the Mitochondrial Disease Community.
After a tremendous amount of work on the part of the whole team, we are one step closer to realising this goal... last week our website went live:

www.mitocanada.org

and on April 17th we will be convening in Hamilton for our first planning conference. on Sunday April 18th we will be hosting a lecture by Dr Tarnopolsky, a leader in the field in Canada - all who are interested are invited and it will be followed by a family social.

Plans have been falling into place and the whole MitoCanada entity has grown by leaps and bounds over the past several weeks as it has all come together.

We are all very excited to see this thing grow!!

Today

2010-03-11T11:02:00.000-08:00

The boys are healthy (yea!).

The cat's are healthy.

Mom's falling apart, but thrilled that everyone else is finally in one peice.

Onward and upward.

Things are lookin' up!

2010-03-04T13:55:00.001-08:00

Both boys are cool, happy, and playing today!
Brandon had a GREAT sleep last night - likely a combination of the antibiotics doing their thing, and the Cough Assist machine clearing out his chest before bed...
Tyler is completely back to himself, which is wonderful to see after 2.5 weeks of being sick!

Brandon is well on the way.

Unfortunately we have had to make the decision to pull Tyler out of daycare for the rest of the year. We kept him home from Sept-Feb hoping to avoid the worst of flu season. He does alright with the illnesses, but they are so so hard on Brandon that we just couldnt risk it.
Unfortunately he was only back at daycare for a week and a half and this last brutal bout of illness took hold. Its just too hard on Brandon.

Thankfully kindergarden will start in the fall and he will be in a less 'snotty' environment - its just impossible to avoid with daycare.

For now we will enjoy some newfound health, and happy kids.

New Equipment

2010-03-03T17:24:00.000-08:00

Well Brandon had a better day though he is still getting feverish and his chest sounds awful.
The boys had me build a giant fort in the living room which kept them pretty content for the morning at least.

This afternoon we drove into the city to see the Respitory Therapist and pick up our new 'toy'.

Because of the weakness Brandon's disorder causes, he has alot of trouble coughing. its been an issue for a while, and basically when he's sick, you can hear his chest grumbling and rattling and you just want to cough FOR him... but when he coughs it just doesn't accomplish much at all, as he just cant get enough force built up. It's just part and parcel for neuromuscular diseases unfortunately.

We talked about a machine called a Cough Assist a while back and this illness has made it clear he needs the extra help, and thankfully the respitory department had one kicking around (their 5000$ a pop from what Im told - yeesh!), so it now lives beside Brandons bed.

Basically its a machine that hooks up to a mask that goes over Brandons face. the machine will blow air into his lungs, get them good and inflated, then very quickly suck the air out - essentially forcing him to cough.

It is odd. It feels odd, and we thought it would be a nightmare to get him used to it... he wasn't sure about it at the clinic but by the 3rd round at home, he was asking for more, so its clearly making him feel better!!

Like all new peices of equipment - its a tough pill to swallow, as it represents disease progression and increased needs... but at the same time it is something that will make his life easier, and make him feel better... which makes it worth it.

Hoping tommorrow is a cooler and happier day for him.

Tyler is almost 100% again... happy, healthy, and very much Tyler.
Today he explained to the respitory therapist what DNA was ("did you know thats what our cells are made of?!")... he's a hoot! :)

Thanks for checking...

Keely

possibly, maybe, hopefully, over the hump...

2010-03-02T10:08:00.000-08:00

Brandon was started on antibiotics yesterday (keflex) for the beginnings of pnemonia after several days of very high fevers, and a very cruddy sounding chest...
He's already seeming a little less rough today... though his cough is just awful.

Tyler is cool, and I beleve on the mend.

I think we can see a light at the end of the tunnel.

Muddling Along

2010-02-28T12:12:00.000-08:00

Well Tyler is doing MUCH better today. I beleive he is 'over' this virus (2 weeks later).
Knocking on wood.

Brandon is on day 2.
His temperature has steadily climbed again. Last night he was 104. At the moment he's 102.5.

Good news is he is tolerating continuous tube feeds, so we can hope we might sneak by without an admission, but time will tell.

He's been complaining about reflux this afternoon which is usually the start of his gut not wanting to tolerate anything, which is admission time. but we will see how it goes.

Tentatively optomistic.

Here we go...

2010-02-26T16:15:00.000-08:00

Brandon is hot tonite.

We were hoping we could dodge this one for him, but his chest has gotten progressively more and more junky this week, and tonight he has spiked a fever.
He's at 102 and rising.

At this point he's tolerating continuous tube feeds but has left us very little wiggle room as anything higher than 80mls/hour starts to come back up - as long as we can keep him over 60ml/hr we are doing alright - but if he drops to or below that, we will be heading in for IV fluids.

We will see how the night goes, and see where he's at in the AM but if he's still getting very hot between motrin etc, we will be going in regardless of feeding.

He just has no tolerance of being sick like this, and the IV fluids tend to get him over the hump fairly well.

Every time he gets sick, we end up with flashbacks of last winter when he got a pretty mild virus (fever + sore throat - nothing horrible) and had a major neuro regression - stopped walking for almost a year. it was awful. we're pretty sure the regression was largely because we all weren't agressive with IV fluids, and they kept trying to wean him off before he was ready... The upside is that now we know better, and his records clearly state that the goal is no longer to 'treat' dehydration, but to prevent it from happening in the first place.

Now we just have to hope the fevers dont last forever like they did with Tyler.

I'm tired just thinking about the coming week.

wish us luck.

2010-02-25T17:57:00.000-08:00

Well that about sums up Tyler...

We saw the pediatrician today - jury's still out - he's still spiking very high fevers (103-104), and still coughing aLOT... chest sounds clear to the doc so thats good - at this point were down to 2 possibilities. One: he has a sinus infection. Two: It is just a HORRID virus that is hanging around for a very very long time. (hes had fevers off and on for 2 weeks now).

Surprisingly, were hoping for sinus infection. If it is, then we can assume it was kicked off by a milder cold - which means odds are good that Brandon will only deal with a milder cold.
If however, this is a virus... and I mean the worst/longest virus weve seen Tyler ever get... then were in it for the long haul with Brandon - he cannot handle fevers this high for more than a day - this will very likely land him inpatient for a while.

So were all hoping for a sinus infection.

Doc ordered a CBC, and CRP (tests for inflammation) and figures if it is a sinus infection, and he's had it this long, it will show some changes in these 2 tests. So we wait.

We should get the results tommorrow.

As of right now he is cooking away at 103 in bed. And Brandon has started to cough.

~sigh~

Sick sick sick

2010-02-24T11:19:00.000-08:00

Well the boys are keeping us on our toes.

Tyler is quite sick with a virus - high fevers, nasty cough, sore throat, etc.

It started 12 days ago, he seemed to get better this past Friday, and then got worse again Sunday and has been fighting fevers since. were back to the Ped tommorrow.

Brandons doing a bit better - coughing, but no fever as of yet and hoping it stays that way. He has also got a gtube site infection (skin infection) that were fighting as well...

its been a party...

Hoping things turn the corner soon.

Disney - Day 2

2010-02-08T17:03:00.000-08:00

Alright - for the second installation of the Disney photo blitz...

Today I'll talk a little about Give Kids the World... for any of you readers who have children with serious medical problems, please consider applying for a wish for your child... it is not just a disney trip... it is THE disney trip... the disney trip money simply cannot buy... it was absolutely amazing.

The Village is a community - literally - its about 5 square blocks worth of magic... there are over 200 'villas' - duplexes, 2 bedrooms, 2 bathrooms, large living room, kitchen, dining area, driveway, laundry, the works... VERY cool... we fit the 2 kids and 3 adults comfortably with room to spare. There is several resturaunt options (Boston Market, The Gingerbread House (sponsored by Perkins, and excellent buffet style food at every meal!), Pizza Delivery in the evening (possibly some of the best pizza ive had at that), and the ice cream shop which serves (you guessed it) ice cream all day long... They even have a nifty golf cart that brings you breakfast if you ask them to! Once through the village doors, you pay for NOTHING... simply amazing.

Characters make visits to the village, so you dont need to stand in the lineups at the parks... every evening there are activities, and people visiting with all sorts of surprises (I held an armadillo... possibly MY highlight of the trip...)... its just amazing.

Theres a playground there that might put all other playgrounds to shame... its full accessible, and just all around awesome.

theres a train that drives you all over the village...

just wow.

So with no further ado:

Our villa!

Dad and Tyler at the playground...

Tyler in the playground

And lastly: Brandon, showing off the playground, AND his newly aquired walking skills!!!

It truly was a magical place... in part because of the common ground - every other family who was there 'got it'.. there was no need to explain why Brandon wouldnt talk to them, or why he was in a chair... there was no questions, or leery stares... no children who were too scared to talk to him... every single person there, just - got it.

That alone was priceless. Families like ours very quickly get used to being 'that' family... when were out, people stare. kids stare. parents get that 'aww - poor thing' look in their eyes. Whether its intentional or not, we end up feeling segregated. its inevitable.
But to spend a week where we were literally, just another family in the fray... where the questions people asked were 'how old is he?' or 'what grade is he in?' and not 'whats wrong with him?'.... that alone was priceless.

Up next... Disney!!

Disney! At Long Last! Sort of...

2010-02-07T18:16:00.000-08:00

Well I've concluded that the reason we have been home from disney for nearly 2 months and I have yet to put any pictures up is because the idea of summing up our week in one blog post is altogether overwhelming... So I propose a comprimise:

For the next few weeks, I will pop on regularily and post 1 or 2 pictures, and an accompanying story to go with them. I figure by the end of February I will have successfully shared most of the trip AND made most of the (8 maybe 9?) readers of this blog sufficiently sick to death of Disney.

First a quick backstory: Brandon was told at 3 years old that he qualified for a "wish" from Make a Wish Canada. We have spent 4 years talking to him, tossing ideas around, and figuring out what his 'wish' would be.
At 3 years old he wished to see a rocket.
we thought about a rocket play structure, toy rockets, the space centre in Houston, and finally last year settled on the Kennedy Space Centre, as we could make it an all encompassing Disney vacation/Rocket wish.

And so it was.

So for the pictures:

A rocket of course... we spent a full day at the Kennedy Space Centre (after getting up at the crack of dawn, packing up 2 VERY excited children, 3 VERY tired grown ups, and drove for 2 hours on 'toll highways' (wow) to get there), and it was easily the highlight of the trip for Brandon... a perfect 'first outing' for the week and absolutely wish fulfilling.

Tyler - standing beneath the shuttle... these suckers are big.

The obligatory "family portrait in front of a rocket" picture.... cause everyone has one right?

And I'll wrap up with one from around the Village (we stayed at "Give Kids The World Village" - a place exclusively for Wish families - its phenomenal - we had a 2 bedroom, fully equipped HOUSE to stay in, a minivan provided, the village has everything you could dream of (including a resturaunt that serves only ice cream all day long)... there will be 'village pictures' every day...

Tylers "Bedtime Snack".... yea... parents have no say at this place. :)

Magical only begins to describe the week.

More to come!

Keely

Tylers Wish...

2010-02-04T12:43:00.000-08:00

Well Tyler is busy making mom proud.

He announced today that there's one place in the whole world he wants to go. It's not Disney. It's not the Bahamas (that was last months wish - atta boy).

It's the Large Hadron Collider.

I have never been more proud of him.

Not only that but he launced into an explanation of the program - how they will smash protons into eachother so hard that they will explode (complete with visual effects, and facial expressions that are unmatched) and then collapse and make itty bitty little black holes where theres no light, and how he wishes he could put something shiny in the black holes so he could see what was inside it but that the black hole would suck the shiny thing in faster than its light could get out.

Again... proudest moment of my life...

We have discovered the BBC documentaries and they are surprisingly captivating for the boy... yesterday he watched a full hour of Chemistry: a Volatile History, and today he watched a documentary on black holes (obviously), and a show on dolphins.

BBC is our new best friend.

So yes. my 4 year old can give you a roughly accurate description of black holes.

And his dream is to visit the Large Hadron Collider in Swizerland.

My universe is complete.

Bumbling Along

2010-01-30T08:28:00.000-08:00

Well as always, my lack of updates is good news.

The boys are doing fabulously right now (knock on wood!!).

Brandon has had a very good run these past few months and we couldn't even tell you why - in February he had his feeding tube placed which we know has a HUGE hand in his stability - he is getting extra calories and fluids every day and has finally started gaining weight, and has weathered 3 illnesses at home that would otherwise have certainly landed him in hospital - so we know that the tube plays a part in his overall health.
In March he started Siniment - a parkinsons medication - and we know that has had phenomenal affects on his coordination and movement, and since starting it he has started walking, and is able to eat normal table food again without choking, so that's certainly playing a part.
In July he started on 2 new suppliments (creatine and alpha lipoic acid) that are known to improve mitochondrial function, so those certainly may be playing into it...

All I know is I have not had to sleep on a hospital flip out seat since July and we could not be happier about it.

Tyler is doing great as well - asking a million questions and giving us the awesome chance to also experience 'ordinary' when it comes to raising a child...
So as always - bumbling along - the boys are good, were good, life is good.

Pictures to come soon - I know I keep promising them - my thumb drive with all our disney photos was at my parents house all this time and is en route to our place as I type this - so expect photos in the next few days!

The Hilarious Photo Shoot

2010-01-11T10:41:00.000-08:00

Well its been a while since I updated, and as usual, no news is great news - the boys are doing fantastic on the health front, and we have had a wonderful holiday!

Brandons wish trip was amazing - were still reeling from it - and that will be a post for another day, with lots of pictures.

Since getting back we have enjoyed a great Christmas, both boys had a blast, we had lots of family time, lots of visiting, and lots of friends - it was really just as good as we could hope for. A far far cry from last years Christmas in the hospital.

We got a new toy this month:

Brandon trying it out with Dad

Tyler trying it out with Dad

We love it! :)

and I end with the outtakes from our most recent 'photo shoot'... the boys got matching PJ's for Christmas and the result was this:

On that note - have a great week!

Were home!!

2009-12-12T10:00:00.000-08:00

A much more in depth update to follow in the next few days - but suffice to say were home - the week was phenomenal, and its going to take alot of deprogramming to convince my children that we cannot continue to have ice cream for breakfast, go to amazing theme parks every day, and no, people wont randomly arrive at our home with exotic animals for us to hold, touch, and play with every evening.

Some particularily memorable moments:

Tyler announced that his Goofy is his 'Favorite Disney Predator'

Brandon got to feed and pet the dolphins which was amazing

Mom got to hold an armadillo (their warm - i always imagined them as cold)

Dad got a hug from the Grinch

as we were waiting in the secure area of the Orlando Airport, Tyler amused himself by randomly screaming 'Its a good day to die!!" (quoting the hamster off the movie Bolt - complete with the grunting voice and screwed up face)... against the backdrop of the Homeland Security Threat Level announcements it made for an amusing few hours.... thankfully the men in black did not consider us a terrorist threat and didn't ambush us in the waiting area. Though after 6 hours of burning time waiting for our plane we may well have happily handed Tyler over.

To wrap up a magical, exhausting, fun filled trip, as we were driving home from the airport, on the highway, at 12:45am, immidately in front of us, while we were all looking out the front window, a 'fireball' meteorite flew across the sky, leaving a huge, glowing green trail in its path that hung around for a little bit... It was a fitting end to Brandon's "wish trip".

Now were home, unpacked, and trying to regroup.

Oh and just for kicks, while we wandered Universal Studios 3 days ago it was 38C (100F) out and sunny.... Today, at home, it is dropping to a forcast -48C (-54F) with the windchill.

Welcome home indeed. :)

Pictures soon I promise

And were wishing!

2009-12-02T12:34:00.000-08:00

Well were off on our pilgrimage tommorrow...

We will be flying to Orlando and checking into Give Kids the World Village tommorrow evening... its a village near the Disney empire that is exclusively for children travelling on 'Wishes'.

Make a Wish Canada has been amazing - they arranged everything we could possibly dream of and we are certain this will be a trip of a lifetime for all of us...

The excitement here is over the top :)

Not much else going on so heres a few random pics to tie you over until we get back next week!

Tyler and dad were doctoring up Brandons wheelchair today in preparation for all the miles were sure to put on it this week:

And this one is completely random: Lucy our cat is creepy... the vast majority of her daytime hours are spent staring into this very closet - there is nothing in this closet beyond what the picture shows... clothes, boots, and the like...
Yet she stares... for hours... its rather unsettling.....

Until next time!!

(I will likely update from Florida but if i dont, expect a looong recap next week!!)

The new Seat in action!

2009-11-27T16:21:00.001-08:00

As promised: Pictures of Brandons new Kimba!

It is fantastic to see him at the table in this thing - he sits and eats completely relaxed - its awsome... usually he is in constant motion - constantly resettling, catching his balance, shifting his weight, and occasionally falling right off his chair - in this seat he is completely and totally still - focusing only on eating. Its wonderful!

Not to be left out - Tyler demanded a place in the spotlight! :)

Tonite Brandon is off at the Christmas block party with dad, and I am settling in to watch Home Alone 2 with Tyler...

Good day all around :)

Belated... But worth it

2009-11-27T09:59:00.000-08:00

This summer the boys got to meet the local fire chief and got the chance to check out the fire truck... in our front yard... it was a blast and they were just thrilled!

Here are the pictures I (finally) uploaded and cropped....

My favorite:

The rest:

It was a great day and made for some awsome pictures :D

New Equipment!

2009-11-26T18:08:00.000-08:00

Well today we got a new 'toy' for Brandon!

Muscular Dystrophy Canada and Safeway Canada awarded Brandon a grant this summer to purchase this equipment - its a system we have wanted for some time but just couldnt scare up the money for (and money it costs!).

He now has a brand new Kimba Seating System with an indoor Spider (hi-lo) base, and an outdoor Cross (jogger/bike trailer) base...

This is what the Spider Base looks like: (our upholstery is orange though - pictures to follow this week)

And this is the Cross:

The cross work as a big wheel jogging stroller AND converts into a Bicycle trailer...

the Kimba seat itself lifts off and will secure to either base...

Its FANTASTIC... Brandon used it for dinner tonite and it was so great to see him comfortably sitting at our dinner table - usually he spends most of the meal squirming and fussing to get comfortable - it was awsome to just see him settle right in comfortably! :)

New equipment is always tough - its great that Brandon gets what he needs and has ways to stay comfortable - but by the same token its always hard to admit that he NEEDS that extra support.

For today though were happy to have the means to give him what he needs.

Thank you Safeway and MDC!

Reflections

2009-11-22T13:47:00.000-08:00

Not much happening - Im on the mend finally, but thus starts the electrolyte battle - I'd rather battle wacky electrolytes than low blood pressure any day though.
Tyler is feverish and snotty today - fun fun.
Brandon is Brandon - happy, healthy, and coming down off a fun day yesterday!

So some reflections from the past - old favorites:

Brandon in Mexico in January - less than a year ago this boy could barely sit up on his own - how far he's come... and still the grin...

Tyler - same trip - easily one of my favorite pictures of all time.

Tyler uncanny ability to sleep anywhere at anytime...

Again... uncanny...

Tylers first 'photo shoot'... babyzilla....

Brandon - Mexico - Ice Cream...

The boys in transit.. That is indeed Mr Bear Brandon has there... a much whiter version but the same bear!

A more successful baby photo shoot with Tyler....

Brandon - Mr Cool....

One of my favorites of them as wee ones... :)

This sums up Tys first 18 months....

Brandon was about 3.5 when he started wanting his hair 'done'...

So tasty....

Tyler as an Eeyore a few years ago...

one of Ty's 'cuter' inpatient moments... we spent alot of time in hospital with the stinker that year - thankfully thats behind us!

Ty and our gigantic beanbag

One of my favorites of Brandon - we called him Fudd.

Brandons first wheelchair - the joys of mobility!

Tyler as eeyore the 3rd year in a row... as i said - he's a slow grower...

Our Stinkers...

The boys have Fisher Price digital cameras and this is one of my favorite pictures they have taken... not sure why but baby and kid toes are so cute!

Blackberry photo of Christmas morning last year - in spite of feeling totally rotten he had a very good morning :) Still smiling.

On that note - I'm off for the weekend... enjoyed my trip down memory lane - hope you all did as well...

:)

K

Halfway through...

2009-11-19T11:26:00.001-08:00

Well were halfway through what can easily be described as the busyiest week of the year for our family. I dont know why Novembers are like this for us but they are nuts.

This week alone was full of appointments, bloodwork, meetings, parent teacher interviews, birthday parties, dinner parties, etc... all in 7 days.

Were over a bulk of it - 1 dinner part, 1 lab visit, 1 doctors visit, 4 hours devoted to tracking down aforementioned lab results, one meeting, and 2 hours at the pharmacy down, one dinner party, one hospital appointment, one birthday party, and one parent teacher interview to go.

Tylers latest kick this week is the "Safety Violation"... he has yet to tire of informing us (and really anyone that will listen) that he is indeed a safety violation. we dont think he knows what that is but hey... its pretty accurate in our opinion.

Brandon is doing very well (knock on wood!!!), busy with school and fully enjoying a few days off this week.

Both boys are counting down the days to disney... Tyler realised today that he is going to get to see Lightning McQueen at Disney and the entire thing reached a whole new level of 'awesomeness' in his words...

I have been battling the blood pressure beast the past several weeks. Everythign has sort of culminated this week and i am now dealing with crushingly low blood pressures (75/50 sitting down and what can only be written as '0' when i stand up as neither machine or doctor was able to get any kind of reading when i was upright (and rapidly blacking out - im ok upright as long as im moving constantly but as soon as I stand still for any stretch things go south fast). The meds I am on for said blood pressure have been increased which are actually helping (yesterday I was 85/50 sitting down!! still '0' standing but the 85 was an improvement at least), but unfortunately they have a tendancy to drop ones potassium levels which is pretty dangerous, and as of this week Im already 'moderately low'... too much lower and I'll be in 'critical' territory which they dont like to see.
Its a horridly fine balancing act, and we are all tired of it.

I see cardiology on Friday to discuss the next steps - they will be starting me on a new medication that has been shown to help, as well as preparing to trial IVIG as they (and several other doctors) feel strongly that I have an autoimmune neuropathy at the root of all this. Were all hopeful this might be our answer as the IVIG has the potential to 'fix' me... but were trying not to get too excited at the prospect.

Onward and Upwards.

At this moment, today, we're all doing alright, and we'll take it.

Better Late than Never

2009-11-14T10:17:00.000-08:00

Well its been a long few weeks so I am behind on my updates!

So I'll let the pictures do most of the talking today...

Halloween was a blast - the boys had an absolute ball...

Tyler was Eeyore:

(this is him putting on his 'sad' eeyore face)

Tyler was eeyore the year he was an infant - because we had an eeyore costume his size... then he was eeyore the next year just for kicks because he still fit it - his first word popped up around that time and was (you guessed it) eeyore (or in Tylerese 'eeeyoooo')... the next year he STILL fit the eeyore costume from when he was a baby (what can I say - he's a slow grower) and again - he was eeyore...
Last year I found another eeyore costume and couldnt help myself, as he was still young enough to let me choose for him...
This year I took him to walmart to pick out a costume, gave him full choice of their massive selection - and he picked - again - eeyore.... he was SO happy to find an eeyore costume in his size...

he does make a cute eeyore.

Tyler also picked out Brandons costume as Brandon was at school and it was the day before halloween (bad mom... we didnt even have a pumpkin because i waited too long to get one...) Brandon was THRILLED to be a 'fire ninja turtle' this year...

Were not exactly sure what a 'fire ninja turtle' is but he was happy with it.

Dad even dressed up this year and took them out while mom was on 'candy duty' at the house...

I think they made a good crew!! They certainly hauled in the candy!

The past few weeks have been decent - Ive been under the weather (thus the lack of updates) but things are on the mend for everyone and we are looking forward to Brandons upcoming DisneyWorld Make a Wish trip!!

Things are normal and fun at the moment and were very much enjoying it!

Till next time.

Impromptu trip

2009-11-09T07:41:00.000-08:00

Well on Wedensday we got word that Dave had to go up north to work for a few days, so we all packed up and came to the city on Thursday, planning to stay until Sunday evening and then coming home as Dave was to be home that evening.

As it always go down with the north, plans changed, Dave wound up at a fly in lodge working for Sunday morning then the weather changed, and he couldnt fly out, so there he sits, waiting for the clouds to lift.

Thankfully were used to this scenario and hadnt 'planned' on him actually making it home the day he was supposed to (in 5 years of doing this i dont think he ever has come home on his intended flight).

So the boys and I are sticking around the city for a few more days. their enjoying themselves regardless, and my parents are loving the extra 'baby time' they get on account of it... at least I hope their enjoying it... if not then 'my parents are ready to pull their hair out' would be a better description.

Regardless...

Yesterday we were able to attend a CFL football game curtosy of tickets donated to a local childrens charity - they called me last week and offered me wheelchair accessible tickets to the game. I got 4 as Brandon LOVES the football games, and I figured I'd take Brandon, my nanny/cousin, and my nefew who also loves football and have a fun afternoon at the stadium.

Well we went to pick up the tickets at the stadium, and found out they were actually ROW 1... im not exaggerating when i say we were 3.5 feet away from the turf... it was absolutely amazing... we all sat down and just looked around in complete shock... Our team lost, but from Row 1 a loss is still an amazing game... it was just amazing. The cheerleaders (Brandons favorite) came by and fawned over Brandon... the mascot came by and played with him, even a few players came over and gave him a high five... it was fantastic. he's still glowing.

It was a great day - one of the rare times when were able to forget all the medical crap and feel 'normalish' for a little while.

Pictures to follow once im back at my own computer!

Keely

The Fireboys

2009-10-28T16:59:00.001-07:00

As promised - more pictures.

Tonite the boys decided to be firemen before bed... They both have more firefighter helmets, firegear, firetrucks, and general fireman paraphanalia than any children I know. Brandon even has a full set of honest to goodness, used, Turnout Gear hanging on his wall with his real Deputy Fire Chief helmet... they are serious fans of the firefighters.

And of course their helmets coordinate with the blue jailbird jammies....

They do this quite regularily together - and their games get quite involved... tonite they were rescuing the cat from a burning building apparently. The cat wanted nothing to do with it.

At bedtime Brandon requested that I take some pictures of Mr Bear...

Mr. Bear has been with us for some time. He was MY bear as a child (the date of manufacture is indeed 1982!) and was well loved by the time it got to Brandon... since Brandon claimed him, Mr Bear has been repaired many times, is bare in many places, and has seen the inside of more operating rooms than most grown men... he has been around. But, in Brandons eyes, he's still Mr. Bear and we all love him for the comfort he brings our boy.

This one needs no explanation - this is a tough smile to catch on film as Brandon rarely sits still long enough to get it... Just had to share!