Allow me to explain… unlike many parents of medically interesting little people, as a general rule J and I aren’t overly sleep-deprived.
Sam likes his sleep. Granted, a lot of this is because of the relentless assault of the seizures which completely wear him out, poor little chap.
We also found out a week ago from Sam’s sleep study that as his VNS fires, it causes his airways to tighten just enough to cause a drop in his airflow.
This in turn means a drop in his blood oxygen levels, increasing his heart rate, and rousing him from sleep. And this happens every time the VNS goes off. Which, even without seizures, is every 3 minutes.
Can you imagine being woken up every 3 minutes by someone giving you a little electric shock?
When Sam’s respiratory consultant gave us those results I felt in equal measure heartbroken and angry. After all, we’ve done this to him.
We gave the Dr’s permission to give him the implant, we fought tooth and nail for 4 years to get him the chance to try it. And it’s WORKING.
Sam’s seizures are at a better level now than they have been in years thanks to the VNS, so once again realising that we’ve improved one issue only to give him a different one pretty much tore my heart out.
Then there was the white hot anger in the pit of the stomach at just how damn unfair this all is. He is only a 6 year old little boy. He does not deserve ANY OF THIS.
I wanted to punch someone or something, to have something to blame for the injustice metered out to my beautiful, innocent child.
But no-one is to blame for any of this. It just is.
This isn’t an uncommon issue for any parent. Sort one problem out, another takes its place.
Fortunately for us (and Sam especially), all that’s probably needed here is a tweak to the VNS settings and then a repeat sleep study to see if we can reduce the issue for him.
But for now he is incredibly tired, all the time, because he can never get into the deep, restorative sleep that he needs to recover from the day, learn and develop.
So if he wants to sleep in bed with us, then that is absolutely fine by me… if it makes him feel safe and protected then so be it.