Thursday morning, Collin and I went to get the results of his sleep study from Dr. Snarky. I honestly had no idea what to expect, but was still surprised to learn that Collin has a lot of sleep apnea. I mean, a LOT. Like 28 apneas an hour on average. A few are obstructive apneas (like when people are snoring and do that scary sucking sound and you're afraid they won't breathe again) due to his low tone letting his airway collapse, but most are central apneas, meaning that Collin's brain is not effectively telling him to continue breathing. Not good. In addition, his oxygen saturation is very low at night, rarely staying above the preferred 94% and sometimes dipping into the 60s. Also not good.
Our options for fixing this are limited and not encouraging. The first thing to try was to repeat the sleep study exactly as before, but adding some oxygen. The hope would be that this would fix some of Collin's apnea and correct his low oxygen saturation. However, it ran the risk of taking away his brain's drive to breathe and consequently his ability to get rid of carbon dioxide. So, even though he would have enough oxygen, he would slowly accumulate carbon dioxide which could potentially result in brain damage if it got too high. Not what we need. If that's how Collin reacted, oxygen wouldn't be an option. The other options include surgery to remove adenoids and tonsils in the hopes of making his airway roomier - a big risk for a kid with seizures - and bi-pap or c-pap machines which work well for some people but pose major risks to a kid with low tone, retching problems, and a history of aspiration.
So, when we went into our sleep study Thursday night (we were lucky enough to get in that very night), I was more that a little nervous. It felt like if this didn't work, we had nowhere to go. Collin ended up sleeping quite well compared to his first study despite all the normal wires plus an additional oxygen mask, but I woke up at two in the morning and watched his CO2 monitor for 4 hours, thinking and praying all the while.
One of the things I thought about during these long, dark hours, was a conversation I had had with Dr. Snarky that morning. Now, I should preface this by saying that the doctor and I have come to a better understanding of each other and there is a seed of respect growing there. I doubt we'll ever be best buds, but at least we can speak openly with each other. During our conversation, I was pressing him with lots of 'what if' questions - what if this doesn't work? what if we try something else? what if we don't treat the issue at all? He stopped and became uncharacteristically somber and said, "Given everything, what have you been told about Collin?" It took me a second to figure out what he meant, and when I did, I didn't know what to say. He was asking about Collin's prognosis. Would he talk? Would he walk? When I didn't answer right away, he tried to elaborate by saying, "Collin is special," in a way that made it clear that he didn't mean special in an attractive way - not a special he would choose for his own grandchildren, "and for special kids, quality of life is number one." What did that even mean? Is that not true for all children? And then I realized that his first question had meant even more than I had interpreted. He was asking me to consider how much was 'worth' doing in this situation. In the Collin situation. When I haven't even been given a life expectancy (his words), when I don't even know if he will ever learn to do anything 'normal' people do (my words). How much effort does one expend in a situation like that? And for some reason I don't understand, I did not get angry. I just said, "No one has told us anything about Collin, because no one knows. And so we plan to do everything we can to make it possible for him to do everything he can." Dr. Snarky almost smiled -- it was either at this point or during my pushy questioning that he decided I was okay -- and said, "Okay, then. We need to get his sleep fixed."
Anyway. I was thankful and pleasantly surprised when Dr. Snarky called me the next afternoon to let me know the results of the study, knowing how anxious I was about it. The oxygen worked in that it dramatically improved Collin's sleep, his apneas, and his oxygen saturation. It didn't fix everything, but I will hear the full report at our follow-up Tuesday morning. I was simultaneously incredibly relieved and slightly sad. It has been so great having this time during which Collin wasn't depending on any machines (since the feeding pump left our house a few months ago). Knowing that there is another intervention we will need to learn and monitor is a little hard. I'm sure we'll be used to it in no time and there's nothing we wouldn't do to make things better for Collin, but it's just tough adding new problems and their solutions to an already complicated daily life.