I am trying a short post from my cell phone again. That will explain the crazy words in wrong places.
Patrick was angry with me today. I think he wanted more attention. And I think he wasn’t ready to skip his nap two days in a row. But we made it through.
One of our friends here for to go home yesterday. More of that will happen as families had home for Christmas. That made it so morning med prep wasn’t as quiet and lonely. A few people were there to say goodbye.
We spent some time today trying to get ready for Brian to come back. He comes in tomorrow. So we cleaned and we shopped.
We had a follow up visit with the transplant team today. I bought Patrick a bag of BBQ potato chips at the store and he are these through the whole appointment.. Spitting them out in a bag while we talked and no one batted an eye.
Things still look really good this week. His output was a bit high yesterday which worried me, but they said it was still very good. The changes today were minor. They are adding a lipid to his formula in the morning to help make sure he doesn’t get a fatty avid deficiency. Also, he has been too dry, so they are adding some extra fluid. Mostly just a recipe change. Well, plus a volume change, but that is still easy so long at his gut is OK absorbing it.
The concern is still making sure his lungs stay clear so no elecare formula for a few more weeks.
After clinic, we dropped off some spare parts (a line repair kit and g tube button) to a family we meet inpatient. Their little girl just got a line and started TPN. So we wanted to give her the makings of a special doll.
The rest of the day included boys clues, a craft, soup for dinner that Patrick ate well, and playing the piano. This was made sweeter as I fit some audience tonight.. The grandparents of the boy who passed away. Turned out grandpa is a baptist patriot. They came just to listen to the music.
I just crashed helping Patrick sleep
so this is a quick update. More tomorrow. I have high hopes Brian can fix my internet
Patrick Hoopes 