The last few days have been very emotional and yet, and not because we are dealing with anything new, but because we are still dealing with old issues not yet resolved.
I (mom) administer saline to Stryder by IV every single day. We have tried to ween and go every other day, but his blood levels showed severe dehydration despite him drinking a gallon of water and a huge bottle of Pedialyte®, he gets sleepy and cannot go through his day. The IV’s help Stryder to function, keep him from over heating as much and help keep him at his baseline- not yours or my baseline, but his. I’v been consistently giving him IV’s every single day and he’s been doing pretty great!
Then on Saturday life got busy and I thought I could skip a day. It was a very warm day, but there was a parade in town in the morning and dinner at a friends that evening. Stryder started the morning getting out of the van and almost crying because his hip had popped. Then he spent the next hour and a half complaining that the sun hurt his foot and his legs (he was shaded and it was still early, so not too hot). When the bigger cars came by, he plugged his ears because it was too loud. He was hurting, but also enjoying the parade. Stryder has sensory processing disorder and it’s mostly controlled, or at least where he knows how to manage, but today was different.
Later that afternoon we went to a friends for dinner where he played baseball- well his version where we throw the ball and he hits it. He was also playing with his service dog and another dog, throwing the ball up and hitting it for them to catch. It was getting warmer, but he was in the shade. By the time he was done, the sweat started pouring out. Stryder cannot regulate his temperature and is either too hot or too cold. When he’s hot, the water comes strolling out his pores and he soaks, but he never complains. He had so much fun and that’s all that mattered.
The next morning he slept until almost noon and when he woke, he was so dizzy he couldn’t walk. His head does not hurt and he’s fine when sitting. He spent the day building grenades – (empty water bottles with cut up paper inside-). After he was finished he wanted to play outside and proceeded to stumble out. I had to hold him as he went on the grass. He took off the lid of a water bottle and though it -EXPLOSION! After just a minute, he was too hot, too dizzy to stay outside so in we went.
I sent an email to his Dr, a little worried because the next day he was supposed to have surgery to put a new central line in his chest. He’s had these episodes before and they always go away. He had them a lot, before he was on IV therapy and they always would go away after sleep and fluids. I gave him an IV and he was better. Still dizzy, but he could walk a little, hanging on to the walls. While he was sitting, he was not dizzy- he could play cars, cut up paper, do anything. When he walked, you could see his eyes were not focused, he looked in pain but only said his eyes were shaky and only when he walked. It’s very scary as a mother watching your child not be able to control his legs, not be able to walk normally. The whole time, I had been in contact with his wonderful Dr who was guiding me on what to do.
That night, I gave Stryder another partial bag of fluids, hoping that he would still be able to have surgery to put a new, better line in so that he could continue getting the fluids he needed every single day; hoping when he woke, the dizziness would have disappeared.
When he woke, he was better, but still dizzy. By the time we got to the hospital, he could barely walk again. We got him to the room and there was a t-shirt that said “We <3 Stryder”! It was from one of the nurses that bought it a few years back when we were fundraising for his brain surgery. They said he could wear it in place of a gown. Every Dr and nurse that came in that room knew Stryder, except two. It’s nice knowing they all know his history, but it’s also a little sad knowing he had been there so many times.
Stryder’s nurse asked him to get a urine sample and we would do blood work to make sure he was stable enough to do the surgery since he was so dizzy. Stryder’s Dr called and said we may have to reschedule but he would talk to the anesthesiologist and leave it up to him. The Dr really wanted Stryder at his baseline before putting him under. I agreed, but also wanted to just get it done and not reschedule.
The anesthesiologist talked with me and said that since he has had these episodes before and they resolved, he felt we could proceed if labs were good, which they were. He also called Stryder’s Dr and told him the same. In the meantime, the nurse said that she didn’t think they would give Stryder an IV because his urine was so clear and looked so hydrated. I explained that it’s not about hydrating in that way, it’s the blood volume in his body and he needed the hydration in his veins. She was VERY nice and that made sense to her. The anesthesiologist ordered a bolus bag of saline and within minutes Stryder was more alert and feeling better. As the staff came in, they all noted how this was much more how Stryder’s baseline was. His pulse went down from 120 to 90’s and he was awake, aware.
The surgery went well and in true Stryder fashion, when he woke, he only wanted to eat and go home. He said that the worst part of surgery is staying in recovery. So, he ate some pancakes and fruit and we left.
We did see Stryder’s Dr before leaving town as he was working in the hospital that day. He wants Stryder to have to saline bags for a few days and not to go out in the extreme heat – oh and must wear his sunglasses as the sun made the dizziness so much worse. We are so thankful his Dr. is there, understanding, willing to listen and is patient. I know Stryder is complicated and he’s not like anyone else – it’s hard for me as his mom to watch him struggle and not know exactly what is going on. But I rely on his Dr’s, a lot-
We believe these episodes are from his autonomic dysfunction. When he stands, his blood pressure lowers so much and his eyes have a hard time constricting and dilating as well. His geneticist believes this is from his unstable neck, causing problems on the vagus nerve, spinal cord, and/or brain stem. We don’t know how much is permanent and how much will heal after he gets more neck surgery, but we know it will improve a lot of symptoms and make sure further damage is not done.