Wired in and ready for sleep!

Wired in and ready for sleep!

Earlier this month Gavin had his second sleep study done.  Since my husband took him to the first one last year we thought it best if I take him this time. The first sleep study results just didn’t seem to jive with what we were seeing or hearing at night so we decided to get a second opinion.

Yesterday we went back to get the results of said sleep study. The first thing the doctor did was give us a rundown of the process, what they look for, how they measure and the parameters set around the data collected. He then proceeds to tell us that they were able to collect a great data set – 6 hours in fact! Which led to my first question – were we even at the same sleep study?! Gavin was up every hour on the hour – sometimes 2-3 times! The doctor said that while continuous sleep is great, they were able to string together the 6 hours from the time we were there. The doctor then starts to get into the details. About half way through the results my husband and I did one of those sideways glances. We both realized at the same time, “Well crap, this is GOOD news!”

Let me back up for a minute.

For the last year and half or so Gavin hasn’t slept well (hence two sleep studies), typically waking up anywhere between 2-8 times a night.  He can’t sleep on his back because he startles himself awake (not of his choosing – his CP makes his muscles contract and he wakes up). So he can only sleep on his side/tummy. Like anyone else, he moves in his sleep. Sometimes he gets stuck – literally – and the more he tries to move to get comfortable the more his muscles fight against him, waking him up further. Then there’s the snoring, the (what sounds to us like) pauses in breathing or catching his breath, the congestion, etc. All of which make it rather difficult for him to sleep – not to mention us.

We talked to his pediatrician, his ENT, his neurologist and his PT/OT and while everyone had suggestions (humidifier, elevate his bed, noise machine, steamy showers, night lights, music, etc.) nothing worked. We even added valium to his night time routine. But even that didn’t help. There had to be something more going on.

Well not according to both sleep studies. Airways: perfect. Gas exchange (O2 to CO2): perfect. O2 flow: perfect. Obstructions: None.

Seriously?! So the question of the hour is: Why is this kid NOT sleeping?

So we’re adding to Gavin’s team, again. Enter ENT #2 and a behavioral sleep psychologist.

We have a consensus that his tonsils are enlarged. Enough to cause direct sleep issues? No. Enough to cause snoring and thereby indirect sleep issues (being awoken by his own snoring)? Yes. So we will be seeing a second ENT to get his/her opinion on next steps – likely to remove tonsils to help prevent any further issues down the road but that is a conversation still to be had.

We actually had the opportunity to meet with the behavioral sleep psychologist yesterday. She’s GREAT! While I think several of her ideas just won’t work based on Gavin’s physical abilities, there are a few I would like to try. We are going to try more formal sleep training with him and see if that has any impact. We already have a routine for bedtime – which Gavin responds amazingly well to. It’s the “after he’s asleep” part where there is room for improvement. So like anything else we will adapt a sleep plan for him and see what happens.  But maybe there’s a light at the end of this sleep tunnel…

Most people like to get good news when it comes to their child’s health. And trust me, we do too. But the problem is that good news for us, as it relates to Gavin never actually gives us any closure. Good news never explains the “why”. Why did he spike a fever with no other symptoms and just as quickly why did the fever go away? Why is he retracting (when he breathes)? Why is one minute he playing and full of life and the next minute white as a ghost as if death walked through him? How did an 18 month old get mono (which is very rare)? And why did no one catch it until 6 months later?

Trust me, we feel like the most horrible parents as we sit in follow-up appointments hoping something is wrong, but for us it means there will be a plan, some way to fix what’s wrong, to be able to give him some relief from what currently ails him. One day we hope and pray that good news really means good news. But for now it’s just a double-edged sword.