I purposefully tried to not write updates yesterday.
While I know there are so many friends and family eager to hear what is going on minute by minute, sometimes we just need to step away from the computer and let Max do his recovery without reporting it step by step. Also, I had slept 2 hours the night prior and I felt a little on the grumpy side, and no one wants to see/gear that.
Yesterday he had a really great day. He slept SO much! His heart rate went from the 150's down to 110's once Abbey got up here. She got in Sunday night, and thankfully we are able to have her up here with us. He slept the day away, had great bowel movements, which is so important since having surgery on his intestines.
We got him sitting up in his bed, and towards the evening started very slowly giving him pediatlite to see if his stomach could handle it.
I ended going home last night, for the first time in a week. I would rather be at the hospital with Max, than an empty house without him. But, we've been up here so long, that it was high time I got home and saw how things were there. I got in bed about 10:00, and was out within minutes. I woke up at about 5:30 surprised at where I was, and that Max wasn't nearby. But, got back to sleep and slept for a couple more hours.
I got Abbey up and around and we headed back to the hospital this morning. Steve got more rest, and Max rested too, which we were worried he would after sleeping all day long!
Today, he got an increased dose on his seizure medicine, Keppra, because he has not been able to take his oral seizure medicine in a week. His neurologist wanted to make sure he's covered with a little extra Keppra, to make sure he has time to get back to a therapeutic level on the Vigabatrin.
That has caused him to be super jittery and twitchy today. So, we're having to inform anyone who walks in to do their part of treatment that this is what happens when Max gets an increase in Keppra, so they don't think it's seizures. He's been awake all day, but is feeling worn out from moving non-stop.
Last night before Abbey and I left to go home, I was given an invitation to the "Snow Pile" today. It's an event that allows parents of kids in the hospital the week of Christmas to go "shopping" for their kids. A volunteer came to get me at about 11:00, and walked me to a large conference room that looked like Santa's Workshop. Piles...and piles and PILES of toys lined the walls and the middle of the conference room.
Another volunteer helped me shop, letting me know what out of each pile I was to take. 3 large toys, an art toy, a book, a blanket, a stuffed animal, a beach towel with R2D2 (the only yellow thing I could find), a game and a puzzle. Abbey got a game, a book, and a stuffed animal. Then we walked over to another area on the way out, where they gave me a bag full of wrapping paper and ribbons. It was so helpful to have a few things for his Christmas, without having to worry about getting out and shopping for him!
There has been no talk at all about when we might get home. So, we're starting to have a back up plan in case we are here for Christmas...which is definitely a possibility. The rooms are emptying every day, so there are very few kids left in our hallway. They may move us in the next day or two to make sure the kids that are here will be near each other so the nurses aren't running up and down the hall. We'll try to get a sleep room Christmas Eve if we're here, so we can all wake up Christmas morning together. And, we'll open gifts here.
But, we're hoping we won't have to do any of that! And will get to wake up in our own beds Christmas morning!
We are waiting to see his metabolic doctor soon to see about starting his food back up. They have seen some promising level changes in his levels that point them to trying a lower protein diet. Since we are already in the hospital, and they can take levels to test if the new diet is working, we may start that here. But, if not, it may be something we start when we get home.
Once we know what diet he will be on, he will start eating again. Then we'll see how things progress.
I guess that's the bulk of the update today. I will check in within the next couple of days with more updates as things keep moving forward. Thank you for your continued thoughts, prayers, and encouragements through this whole stay.