Half the Energy, Twice the Spunk

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!

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

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

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

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.

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