Hey all! I am soo happy to be writing this from home! I mentioned in my Sunday post that Wyatt was having a 24 hour EEG, overnight at the hospital this time rather than ambulatory here at home. For being so short of a time, really, it felt like an eternity! Probably because this hospital stay Wyatt was healthy and not wanting to stay confined to the room, and wanted to be a lot more mobile than he could be due to all his wires and cords.
However, lets back up! Alllll the way to Monday, Memorial Day. We spent the day with family, with Wyatt playing with his cousin Mermaid Girl and just having a fun holiday.
There was also a lot of sitting around on this blanket, chilling out in the shade. Tiny Bebe was giving her parents a run for the money, and not napping – she totally has FOMO. She slept maybe 10 minutes before she was up and wanting to sit up and look around.
I was glad that Wyatt had such a fun day since the next day we were up and at ’em early to head to the hospital. I packed our bag full of toys, books, drawing paper, crayons (thanks Cindy for this idea!), his favorite snacks, and his tablet – plus my own headphones for me.
Once we got there it was a never ending stream of doctors and nurses, and finally the EEG study team was in to hook little man up. He is actually really awesome at this part. They said a lot of kids fight it, but Wyatt doesn’t mind hook up. He was busy entertaining the nurses/techs with Peppa Pig which he was watching on my phone. Then after 15 minutes (I think) he was all ready. I was so happy that the woman who cuts his hair was able to fit him in last week because he still had a ton of hair for them to work around, despite having a ton cut off last week. He just has the thickest hair. That little ponytail cracked me up.
Billy was at work by this point, he pretty much dropped us off and left, and Wyatt and I just played and snacked and read all day. Well, he did. I did mostly his bidding. I did put him in his wheelchair for awhile to let him wheel around the room for some physical activity which was a bit challenging as I had to move the cord around as he went, but it wasn’t too bad and he got to get out of bed at least. We sat on the bed, we sat on the couch, back and forth, back and forth. I was pretty exhausted by the time Billy got there! Wyatt was doing great though, and was as happy as he could be!
Billy got there in time for dinner, and I took a little walk around the tower building, of course shopping in the gift shop, while he played with Wyatt for a bit. Neither Billy nor I really slept; I slept all curled and contorted with Wyatt upon his request, and I was glad that I did. He woke up at 2 am and didn’t know where we were and it scared him. At least I was right there, because the pull out couch/chair bed thing was actually pretty far away from his bed. It was big enough for two parents I think which is a change from most hospitals we have stayed at. Anyway, I feel like I have really gone on about the sleeping situation!
The next morning Wyatt got up pretty early, 6 am, but the staff started coming in not long afterwards and he was unhooked by 8:30 am. That was the hardest part and the first time he cried while we were there. That glue they use to attach the leads just really sticks in his hair and they had to pull pretty hard, which of course pulled his hair too. My poor kiddo. Soon though he was back to smiles and I took him for a walk around the floor a few times while Billy waited in the room for the discharge papers, and then we were free! Home, we bathed that kid good with Dawn soap to get the goop from his hair and then he promptly took a nap. I actually did too. Lol. Poor Billy had to get back to work but at least this time he worked from home.
We will know the interpretation of the results soon. We got them already in his online med chart but we do not understand all that neurological jargon speak so it makes zero sense to us. I did catch three confirmed seizures as push button events (when I think I see a seizure or seizure activity, I push a button and report what I see). Wyatt has very brief focal seizures – a lot of people would miss them. Sometimes his eyes just shift right for about five seconds and that is it. Sometimes it involves his eyes and his arm jerking up, and is longer, about 10-15 seconds. These breakthrough seizures are so frustrating. He usually has about 2-3 a day at home, and that is what he had at the hospital so we were glad to see what we see at home is pretty much right on.
Wyatt has also been having some difficulties lately, physically, that he hasn’t had before. He has been “noodling” when he tries to stand or walk, just greater weakness than was there before. However, he had a med increase soon after his shunt revisions and it is hard to say at this point which is causing it. We are hoping his epileptologist will be able to shed some light on this for us and if it is his meds, help him out. I guess one of his meds, Onfi, can cause these side effects. So, even though we don’t have all the answers yet, I feel we got some good groundwork laid to find them out.
Today we are going to take it fairly easy. We are going to get some outside time, and I am going to clean but no school today. In fact, I think we are going to segue into a new summer school routine, especially since Wyatt has a ton of appointments and fun things happening this month. I am looking forward to putzing around outside today, and I am sure Wyatt is looking forward to playing in the backyard as well!
And that my friends is it for today. I feel like I wrote a novel today!