I really need to start trusting my gut more. My concerns about Little Mans not sleeping through the night being shunt related were probably right. After dealing with it for months and other things progressively seeming to worsen we found out his shunt was most likely the culprit.
Last night about 1030 he woke up fussing but didn’t put himself back to sleep like normal. Figured dirty diaper so checked and that wasn’t the case just a little wet. Changed his diaper then put him back down and pat his back to help him settle back down and he ended up vomiting. We got him cleaned up and changed, sheet and blanket changed out and went to try to put him back to sleep again. Same thing, round two this time we gave him a bath rather than just wiping him down. He ended up throwing up a third and fourth time within the hour. By the second time during his bath we were questioning going to the hospital to be safe and check his shunt, after the third time it was decided.
We headed to the hospital just before midnight and the whole ride I was so worried he was having a shunt malfunction and would need surgery.
Went over everything going on and they did a CT and x-rays. After waiting for results for over an hour someone from the neurology department came in and let us know his shunt was over draining. I’m so grateful that he has a programmable shunt, they adjusted the setting from a 1 to a 5 (on his 1 is draining the most, 8 is draining the least) right there. He was being admitted for monitoring and received an IV for fluids since they had him as not allowed to eat or drink at first.
He was definitely not himself, part I’m sure from being up most of the night and being poked and prodded. Poor guys heart rate spiked so high when he got his IV it took everything for me not to cry while he was screaming his lungs out. Luckily my husband was there to help hold him because not doing well with needles I started to get light headed. It was the start to a very long day.
The rest of the day he slept on and off, had to fall asleep in my arms since laying down he would move and get caught in cords. He was given the ok to try eating breakfast around 830 and did fine with milk and Cheerios.
I don’t remember exactly what his neurosurgeon said when he came in to check on Little Man but I will have to ask at his follow up in 2 weeks. It was something about the over draining leading to small droplets of blood from the tissue pulling. After having time to process it has me wondering more questions. What damage can this blood cause and what are the chances? Can it clog his shunt, how likely is that? Is it brain tissue damage or other tissue?
Another concern is what is it going to take to get the setting right? He had been at a 1 for almost 6 months and we had no idea he was over draining so how long will it take to get it right? They said now that he’s older and skull is more fused together it has changed the pressure from when he first got shunted. So I’m afraid it’s going to be a guessing game of trial and error until we get the right setting and no idea what kind of stress that puts on Little Man. His waking up crying during the night could have been his way of telling us something was wrong and we had no idea. Until he can tell us what he’s feeling it’s that much harder to know what’s going on.
To all the parents of hydro warriors I say trust your gut. I’ve read it and heard it, but then when asked or brought up his sleep issues was told it was probably a sleep regression or he just needed to be sleep trained. After all that my concerns were legit and I pushed them aside not wanting to be the over paranoid parent. You know what, as hydro parents we have that right. We need to be over paranoid that any little thing can be a sign or symptom we need to look into. Don’t make the same mistake I did and let it continue until something else happens. Check it out.
Well, for right now that’s all I’ve got to share. I’m exhausted and hope we all sleep good tonight. Thanks for taking the time to read this.