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

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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

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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.

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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

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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.

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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.

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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.

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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.

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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

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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

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