Sunday, April 13, 2014


It is Sunday night, and we have been home for 144 hours or since Monday night. I was nervous taking my boy home this time. We had an involved care conference Monday afternoon in the hospital, and got detailed plans from GI, endocrinology, and neurology on how to manage Jacob's colitis, adrenaline insufficiency, and myoclonus from home. We were told we would do "hospital care" from home, and if we wanted to stay in the hospital, we could stay as long as we wanted to.

The thing is that we always want to come home as soon as we can, and we were willing to take on the challenge of stool replacement, measuring Jacob's daily input/output, doing labs from home, monitoring one of Jacob's seizure medication levels in his blood from home and "load him" if the blood level would drop too low. The care itself didn't scare us. It was the fact that last time we brought our boy home, he only stayed home for 48 hours. As we passed 48 hours this week, Jacob was still at home.

Jacob has now been home for six days, and it was the right decision to take him home. He is on a high dose of steroids, and it is controlling his colitis at the moment. Tomorrow, we are starting his wean plan once again. This time we're looking at 8 weeks of weaning steroids. It will be summer time before we have a chance to peel them off this time. The outstanding question is also if Jacob will always need to be on steroids for his adrenaline insufficiency or not. We can't test that until Jacob is back to baseline, so this is something we will work with endocrinology on in the coming months to come. As Jacob's colitis is better controlled, Jacob's myoclonus is also so much better. Myoclonus (extreme twitching to his face and body) always comes with pain and stress to his body. Dr. E said on Friday that Jacob looks pretty good. It means so much when the words come from her.

We unfortunately got some not so good news on Wednesday. Jacob is closely monitored by his ENT doctor due to the fact that he has cholesteatoma. This is a cyst in his ear eating away at his middle ear. If this is not controlled, Jacob will loose his hearing completely. You can control the growth of the cyst with ear tubes. Something Jacob had put in a year ago. Unfortunately he has lost one of his ear tubes. This means we are looking at another surgery, most likely in June. As any time Jacob is put under, there are always many who would like to have something done. We are looking at doing botox to Jacob's salivary gland to reduce his secretions. We are also checking with his GI doctor if he needs any further procedures, since he is suspecting Jacob has more than colitis going on in his tummy.

After having lived 3 weeks in the hospital, we are behind on life. This weekend was a catch up weekend. We finally got to do some yard work and clean out our garage. I had piles of paperwork to take care of, a house to clean, and Sarah was excited to plan play dates and sleepovers again. Today was the perfect day for a stay at home day. We all cuddled up on the couch to watch the movie Frozen. It was a great ending to a weekend at home.

To more days at home!

Love, Maria.

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