Friday, November 22, 2013


Jacob had his big day today. We knew he was going to need a breathing tube during the endoscopy due to the anesthesia. The big worry was how easy it would be to take out the breathing tube again. Everyone was relieved that Jacob was breathing on his own right away after the procedure. Big sigh of relief. He has been on bi-pap all day to give him a little bit of a break, and he hasn't been too excited about that.

The anesthesia was carefully picked for Jacob, and a short-lived drug was used. He was already awake when we met him in the PICU, and has not taking a snoozer all day. This is the boy who once slept 16 (!) hours straight after anesthesia.

Jacob has been a little uncomfortable throughout the day. We had some seizures early on, but nothing his regularly scheduled meds throughout the day couldn't take care of. He has not peed on his own all day, which is usually a sign of pain for Jacob. He has also had more oral secretions than normal, but overall a pretty uneventful day in the PICU.

For the endoscopy, it did confirm that Jacob has ulcerative colitis. I can see the inflammation of his colon just looking at the pictures taken from the endoscopy. Jacob might have something going on with his small intestine too, but his GI doc didn't want to go there until we have the biopsy back tomorrow. Monday, we are sitting down with his GI doc to come up with a long-term plan of care.

So, the big question is if we will spend Thanksgiving at home or here? His GI doc said it is a 50/50 chance today. Jacob's attending on the floor will try to use his super powers to get us home in time for the holiday. He doesn't think any kid should spend two consecutive Thanksgivings in the hospital. As always we know our boy is in charge. Wherever he decides to be, we'll bring the turkey!

I wanted to end the post with one of our happy moments this week. Jacob got a visit from his best friend Selina. Jacob forgot about his colitis and being in the hospital for one evening as he got to do crafts and hang out with one of his favorite people in this world. Having Miss S visiting brought me back to this time last year when Jacob was fighting colitis for the first time. Miss S and her sister had no problem crawling up in the hospital bed for some craft time. It still gives me goose bumps thinking back on that special day A Special visitor. Jacob sure is very lucky to have Miss S in his life. She is a special soul.


I will sleep good tonight. I can't deny that I have been worried about how today would go. To see my boy peacefully sleep in the PICU tonight makes me incredibly thankful. That is honestly all I need for Thanksgiving.

Thanks for all your support always.

Love, Maria.

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