With all of the hospital stays we've had this summer, it's caused Max's doctors to put their heads together once more on our enigma of a boy, and try to figure out what's been going on.
Health wise, he's doing really great. His metabolic levels are some of the best we've seen. His EEG shows improvement. He's gained weight, and kept it on despite going down on calories. He's sleeping well. Yet...he's had more hospitalizations in the past 3 months than he has in the previous two years.
What they have come up with, including us into the conversations for info and feedback, is that they think we may be dealing with some anxiety issues. A-W-E-S-O-M-E. One more thing to add to his list. I've not been thrilled about the idea...I mean really, doesn't he have enough diagnosis? Don't we give him enough medicine, and monitor him for enough things?
But, it really does make sense. We started to put the pieces together when it seemed over the past several years, anytime Steve was out of town a lot, or a lot of changes going on in our house, or we were highly stressed, he would have issues. Sometimes it would be not sleeping. Sometimes it would mean vomiting spells. Sometimes it would mean seizures. Sometimes it's severe constipation.
And every time the situation would pass, he would be fine, as if nothing were wrong. So, while it makes sense, I'm still wishing it not to be. I mean...I really love Max's personality. He's hilarious. He's sweet. He sings all the time. He talks and talks and talks. I don't want to put him on a medication that has the potential to change him.
But, I really really really don't like him to be in the hospital. Especially for reasons that we could control, to avoid being in the hospital. We have a plan right now to give him some medicine on the bad days. Like today. He's had seizures every night for a week. Steve was out of town most of last week. He's been constipated too...Max - not Steve. It's all starting to add up with the fussiness, and fitfulness, and grumping and griping.
Today, the only place he's been happy is in his bed. But, he's still a bit frantic. This is the sort of day that we can tell...we're going to be up all night with him...or he's going to work himself into a vomiting spell...or we'll definitely see seizures tonight. So, I take a deep breath in, and finally agree to the medicine to chill him out. And...it works...kindof.
It chills him waaaaay out. His eyes are little slits which he looks through and he still continues to talk. But he's slower...he's groovy man. He's altered. And I'm reminded that we just have so little control over all things Max. We have to make the decisions, do we have him be who he is, who we know him as, and have him in a frantic, anxious state. Or, do we dope him up and hope it reboots his system to get him back to his baseline, all while he fights the medicine and it's effects. Neither seem like the best choice.
But, they are the choices we have, and we'll continue to make the best decisions we can, with the information and help his doctors can give us. And hope we all sleep this off tonight...and have a much better day tomorrow.