THE SNOWBALL

We're on week 3 in the hospital now, two stays in the PICU, and one stay on the floor. We have no idea on how long this stay will be at this point. One day at a time...

This hospital stays reminds me of that little snowball going down the hill and for each roll turning bigger and bigger and bigger. You put that snowball in motion, and there is simply no stop. Or as a friend of mine said yesterday "it is as if you bring in your used car to the shop, and suddenly there are all these things that need to be fixed that you had no idea about". I don't want to compare Jacob with a used car or a snowball, but I think you get the jist of what is going on.

The nasty seizures we originally came in for are now controlled. We have over the last couple of weeks done several medication increases, and we also tried IVIG. Something in that mix actually worked, and got Jacob to a much better place when it comes to his seizure control.

Jacob has been spared GI issues his whole life, if I disregard that little feeding button on his tummy. Not a little issue maybe, but something that we're so used to these days that I wouldn't even think twice about his g-tube. He tolerates his feeds great, and with the help of fiber and banana puree his tummy has been in good shape...until now...

The colon is very infected. There was talk about chronic colitis. Yesterday, they started talking about inflammatory bowel disease. We had so hoped that this would be a viral infection attacking the colon, but it seems like Jacob will add yet a diagnosis to his long list of medical complications. They have started him on anti-inflammatory drugs. We have to give them a couple of days. If they don't do the job, we might have to treat it with steroids. Jacob has had excessive diarrhea for 2 weeks now, and today was unfortunately no better. Since he is loosing so much stool, they had to bump up the stool replacement even further today. This is also what keeps us in the ICU. On the floor the nurse with multiple patients can't keep up with Jacob's stool output and replacing it with the right amount of fluids. Knowing what we do today, I can see that Jacob has probably been in quite a lot of pain over the last 2 weeks. It might even have triggered all the seizures we noticed without no clear explanation. His lethargy and sleepiness, fevers, and high heart rate can all be explained by IBD.

Jacob is despite this extreme diarrhea in good spirits. I think he finally feels better, since they are so on top of his nutrional intake now. I am sure he was dehydrated and malnutrioned last week, especially when we saw the long list of nutrional values being low in Jacob.

We are glad that we today have an answer to what is going on in Jacob's gut, but very sad to add this diagnosis to Jacob's already too long list of medical diagnoses. Nutrional intake is going to be a high priority for Jacob moving forward. We might have to change formula and add quite a bit of supplements to his diet. There is also a suspicion that he has a fat malabsorption after his Vitamin K deficiency on Friday. If that is the case, he will be put on a specific vitamin supplement for that as well. Dr. C. is also not sure if this is related to his mitochondrial disease or not. There is not a direct link between IBD and mitochodnrial disease, but a few cases reported.

Dr. E is back in town again. We're happy to have her involved, since she is going to be our key player for helping us manage this together with GI. But before we can even go there, diarrhea has to stop. It is really disencouraging to not see any improvements, if anything today was worse.

On a postive note, we're starting epi tomorrow morning! We are excited to finally get the ball rolling on that one.

With Thanksgiving only a week away, we're pretty sure we will spend this year's holiday in the hospital. It is not what we want, but we'll take Thanksgiving to where Jacob will be :-

Much love,
Maria.