Neither Steve nor I have had the energy to keep up on the blog this week. But, I want to try to do an update for those of you who do not follow along on Max's facebook page as well.
Max has been in the Pediatric Intensive Care Unit (PICU) since Tuesday morning. It was determined, due to my own abrupt illness, that he had a stomach flu, and simply needed rehydrating and some of his medicines by IV since they were giving his gut a rest.
Yesterday, late afternoon, I was able to go up to be with him and stay the night to give Steve a chance to come home. Max was restful, but happy to see me as he started waking up. They also started feeding him slowly yesterday. By this morning, he was much more interactive and waking, but with that came the tremor from the load of seizure medicines he's on.
It's something we're going to have to talk with his neurologist, as well as his pediatrician, but we think that a combination of the double dose of seizure medicine he has to be on to cover the medicines he can't get through his stomach. If you've ever taken a medicine that makes you jittery, it's like that, only through an IV and at an incredibly high dose for your body. Every time he's on it, it hits a level that makes him move like he's coming out of his skin. Some doctors have seen it and think it's seizures. Thankfully, the PICU doctor watched the progression and we talked her through it all day.
This afternoon/evening, the plan was to move him back up to the floor. He was tolerating his food. He was starting to wake more, and he was not having any fever or vomiting. I left Steve and Max to pick up Abbey from school and take her back to the hospital at 3:00. When we got back there about an hour later, Max was full on agitated. He was crying and soaking his bed with sweat. It looks like a sort of anxiety attack he's getting.
I asked Steve if the PICU doctor had seen Max yet, and he said not since he was that agitated, and he and I thought she definitely should before they move us to a floor, in case they would end up putting him right back down in the PICU. As soon as she came in she said, "oh no - he's not going anywhere.". They had his entire room packed up and ready to move him, and just in time we decided he should stay. They gave him some medicine to calm him, and a slow drip of another to keep him calm. We'll talk with neurology about starting to get him off of the seizure medicine's high dose so we can get him back to his regular dose.
He will still have some of these side effects as the medicine works it's way out of his system, but that will happen when it's actually working it's way out, not when we're still giving it to him at the same high dose without weaning it down. So, for now, he's been given some medicine to keep him calm, so he can carry on getting better. Once the extra seizure medicine is not through IV anymore, he'll be on the road to coming home. Hopefully next week.
Now I will close my computer and lay my head on my pillow. Where I am surely going to collapse until tomorrow morning.
Thank you for all the kind notes, prayers, and well wishes for us all. They really do mean a great deal to us when we're in the hospital and he's sick. Even when we don't respond to each one, we do read each one and it's very touching to know how he's loved the world over.