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

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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 :)

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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.

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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.

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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.

Links to this post

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.

Links to this post