Half the Energy, Twice the Spunk

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

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

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

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.

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

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.

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

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

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 :)

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

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

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

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

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

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

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

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

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

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

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.

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.

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.

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 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

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

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.

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

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.

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.

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.

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.

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

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

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

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

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 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

Enough Said.

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.

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. :)

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.

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!

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.