Today is going to be a better day we hope. We moved from the PICU to a regular room late last night. That is a huge relief because the PICU rooms were shared and it made sleep difficult. Last night I got to sleep in the bed with Maddie sleeping on me. That is something that just wasn’t possible in the PICU with all her lines and monitors. We both slept MUCH better because of it.
Yesterday was tough for a few reasons. Nausea was really her biggest challenge. She only vomited 3 times but it was after almost every time she ate any food at all. We are working hard to keep her on her medication schedule, and the two seizure meds she takes do not have IV equivalents. So we have given them orally at each dose but then we have to let her stay very still in order to avoid her vomiting and losing her meds.
At the same time, everyone who entered her room yesterday wanted to see if they could get her more active, sitting up, interacting with them……So we had to eventually just ask people to leave her alone in the hours after meds have been given to let her stomach get more settled.
Those of you who’ve spent much time in hospitals know the hierarchy of various physicians. In the PICU, there are LOTS of residents, only a few fellows, and then the attendings are around, but not always there when you need them. After surgery, Maddie had a CT scan which showed that she had a small amount of blood on her brain in the area near her craniotomy site (where they cut into her skull). It also showed a bit of air in the brain. The air can cause nausea and headaches, as can the surgery of course. The blood is concerning because they worry about the potential that the bleeding may not have stopped. To determine that, they follow her progress and look for signs of change in her cognitive/mental status and changes to her vitals. Her vitals were really great yesterday, but because of how much she’s sleeping, certain residents seemed quite alarmed that it was signaling negative changes cognitively. Her surgeon, however, felt that the amount of blood was very minor and that she was acting appropriately for the very major surgery she had just had. I absolutely trust her surgeon, but nonetheless, as a parent, it’s tricky to stay calm when you have doctors around making you feel like they aren’t super comfortable with how your kiddo is doing.
We have seen a few seizures since the surgery, but they are greatly reduced from her pre-surgical levels right now. We know that her seizure activity right now is not necessarily representative of what it will be like once she has fully healed but we are hopeful.
Doctors haven’t rounded on us yet today, but I think our goal will be to have her a little more awake and alert. She has already held her head up a few times today but she still is weak in that department and seems nauseous when she is totally upright. OT and PT will come back by to try to force her to do some work shortly. She did bear weight on her legs this morning trying to get back to me (just on the hospital bed) so we know she can do that and that’s encouraging too.
Thanks for checking in on her today!