In a conversation with our Respirologist yesterday, as we were discussing the results of Jake’s recent sleep study, she posed the question to me, “So, when IS he breathing?”. My heart sunk. After all, hearing a doctor say this to you is never good news.
Let me back up a few days, and explain where she was coming from, and where we are headed from here!
A few days ago, we had a sleep study for Jake. For the sake of those who don’t know what a sleep study entails, here are the gory details: you take your child to the hospital, to “sleep”. They hook your child up to a million monitors (okay, I think it was actually about 35, but it felt like a million!). Your child has wires, probes, tubing, stickers, monitors, etc… hooked up all over his tiny little body. To the point where you can hardly recognize that it is your child. Then they turn off all the lights, leave the room to monitor him from another room, and you are left with a very distraught, very uncomfortable, very sleep-deprived child (because by the time they are done hooking up the monitors it is two hours past his bedtime) that you can’t pick up and rock to sleep because the wires don’t reach far enough. So, you fight your hardest to help him get comfortable and go to sleep, which happens around 11pm. Then, after a very restless sleep, in which the techs come in about 47 times to adjust wires, they come in and wake you up at 6:00am, and kick you out!
The purpose of the sleep study was to get an idea of Jake’s sleeping habits, and to be able to confirm an official diagnosis of obstructive sleep apnea, or OSA, (which we were pretty sure that Jake had). With this official confirmation, and the information passed on from the sleep lab, we hope to be able to create a plan going forward for how we can remedy this.
At the end of your study at the sleep clinic, they tell you that it could take up to 4 months to hear the results of the test.
I heard back from the doctor yesterday. Four. Days. Later. Not 4 months. 4 days. That is never good news.
The sleep study gives lots of information. But at the end of the study, they assign a number, called the “Apnea-Hypopnea Index” (AHI). Put very simply, this number represents the number of times that the individual stops breathing in one hour. According to our Respirologist, anything over 10 they would consider to be classified as severe sleep apnea for someone like Jake.
Jake’s number was 94.
This basically means that every 45 seconds or less Jake stops breathing. All. Night. Long. It was as our Respirologist was explaining this number to me that she stopped to add, “in light of this information, my question is ‘when IS he breathing?'”.
At this point, you can cue the tears. And the heartbreak that came with the realization that Jake is much more severe than we originally thought. And the grief that my not-yet-3-year-old has something else to deal with. And the frustration that rears its ugly head every time we encounter more hurdles with Jake. I am disheartened.
Don’t get me wrong, I am also thankful. Thankful that we advocated (read between the lines: pushed very hard!) to get this done sooner than later. Thankful that there is a solution – something called a CPAP machine (more about this later). Thankful that modern medicine has given us effective coping strategies, and thankful that we caught it early, and now we can move towards a solution that will help Jake grow and develop at a more optimal level than he has been.
There is much to be thankful for. But when a doctor questions when / if your child is breathing at night, you can take a few moments to grieve.
And this pretty much sums up how I feel about this new turn of events!!