It’s been harder to update from home because Maddie is getting her energy back and naps are not as frequent. In fact, I’ve been napping when she does as she isn’t sleeping through the night right now. Tonight while making dinner, my mom encouraged me to update all of you kind people who are keeping up with her progress. We were discussing what I should say about how things are going and how I am a little uncomfortable about talking about some of it. Things are pretty tough right now. But I just feel so thankful and blessed for how things went last week and for so many other aspects of her surgery and recovery, that it feels funny to harp on the smaller stuff. I just don’t want it to sound like I’m complaining.
I guess the best way to frame this update is to say that even when brain surgery goes as well as it can possibly go, it’s still brain surgery. Which is a big deal. It is so very hard on young kids. Especially if they don’t understand what they’ve been through and why. And so it is also hard on the family. Because it’s tough to see your child suffer. And it’s hard not to get sleep while you’re staying up vigilant when your child won’t sleep because her incision itches and you cannot under any circumstances allow said child to scratch open that incision.
Our news is varied. On the one hand, Maddie is still affected by the steroids which she was on until Sunday. She’s uncomfortable and has some unusual behaviors because of them. These behaviors can be mistaken for seizure-like motions at times and that is hard on my heart. I know to expect seizures and changes to her seizures, but when I see something new and suspicious it feels devastating. Luckily these behaviors are changing very quickly. The phases don’t last long and hopefully by tomorrow the scariest one from today will be gone.
On a side note, I was comparing notes today with another seizure mama whose daughter, Kate, had a Corpus Callosotomy 5 days before Maddie. Our girls are doing some of the same crazy things: Fake burping all day, lots of head turning, as if saying No, higher respiratory rate from the steroids which seemed to make Maddie pretend to hyperventilate purposefully on and off throughout the day. I’m sorry she’s dealing with the same craziness but its comforting to know we aren’t alone in this.
Back to the news, Maddie is improving daily in becoming the Maddie we know and cherish again. She’s smilier everyday. She’s more huggy and kissy too. She is making better eye contact and is calmer. She is also getting stronger everyday.
But she is still not really interested in her toys and keeping her occupied and from attempting to scratch her incision can be really trying. I even had to order elbow immobilizers today so that she can’t bend her arms to reach her incision. I hope not to have to use them, but when her urge to scratch is keeping us both up from 3 am on……sometimes you have to try something a bit weird. Most likely she’ll have moved on from wanting to scratch by the time the immobilizers arrive. Which would be just great.
The top of her head is soft from there being fluid and swelling between the scalp and the craniotomy site. It’s weird to kiss the top of your child’s head and it feel mushy. I know it will pass but that feels scary to me. There is never a moment where an adult (my mom, Brandon, or I) do not have complete control of her mobility. She isn’t walking well yet, though we are practicing. This means right now she sleeps with me all night so that I make sure not to miss her trying to scratch. I bathe with her so as to make sure she doesn’t tip over and bonk anywhere that’s important and tender. She’s riding on one of our hips most of the day and we always have a hand on her even in her amazing padded playroom.
So it is exhausting. I’m so thankful my mom can be here to help during this. Obviously Brandon has to go to work during the day so it’s really helpful to have someone else here who can help me with all of it. We’ve also had some wonderful people prepare us meals or send gift cards or yummy fruit and gifts and flowers and balloons. All of that makes it a lot easier on us and we appreciate all of the kind gestures.
I guess the most important part of our news is how the seizures have changed. That is of course what makes it all worth it…..at least right now it certainly feels worth it. Again, I hate saying anything about it because I know we are a long way from knowing the end result of this surgery seizure-wise. But right now things are very good. In the first two days post surgery, we saw some strong myoclonic seizures while she was awake. They occurred in singles, rather than clusters. But they were strong enough that she’d likely have been knocked down if she’d been standing. But two days post surgery was the last time we saw any of those. She was also having eye deviation seizures in the hospital, but those stopped on Thursday and I haven’t really seen them since. She has not had a single big tonic seizure since the surgery still. The only seizures I’m definitely seeing right now are very mild clusters of myoclonics while she is falling asleep. Of course I’d prefer to see none at all, but to see no seizures while she is awake for days in a row really feels like a miracle. I would have considered the surgery a success if it reduced her daily seizures by 50% and eliminated the most dangerous drops. To be where we are is really fantastic and amazing and unexpected. So I’d love it if you’d continue to pray for her healing and that the surgery continues to provide her with great seizure control. She has a long way to go in her healing and it will be a while before we see how truly successful the surgery has been for her.
For now, we are trying to get her through the tough healing part so that she can enjoy her days which will hopefully be much less seizure-filled.