You may remember Dr. Snarky. I think I can safely say that he is my least favorite doctor - not only because I hate sleep studies more than any other test, but also because I never like what he has to say afterward. Last week was the follow-up for Collin's most recent sleep study and I did my best to psych myself up mentally for what I knew would be a tough appointment. It's not that I expected bad news - Collin has obviously been sleeping significantly better since starting his 1/4 liter of oxygen at night. It's more that no matter what the report says, I always leave feeling like Collin is in trouble of some sort. And, people, I DON'T. LIKE. THAT. FEELING.
None of my self-talk prepared me for what Dr. Snarky pulled out this time, though. His hope had been that keeping Collin on oxygen for a while would somehow resolve his central apnea issue, but it didn't. Dr. Snarky's conclusion? Collin does not breathe well in his sleep, so this indicates that there is something wrong with the 'respiratory box' in his brain. Therefore, we should talk about the possibility of a ventilator. With a trach. I was, needless to say, speechless. I could feel myself grasping at all of the lifelines I use in tough appointments: "Collin is the same boy he was before I came in here;" "Collin is my son and I am his mother, no matter what;" "There is nothing this doctor can say that will separate me from Collin." It worked to get me grounded, but I still felt an almost frantic disbelief at the fact that we were having this conversation. So, I employed another tactic I've developed over the past two years. I like to call it Stone Face.
When using Stone Face, no facial muscles move other than what is necessary to blink or talk. No smiling at jokes. No frowning at bad news. It's a tough one for me, because I typically prefer to please people by reacting appropriately, but it's also very effective because it continually reminds me that I am simply receiving information, which I will later process and use to make a decision. It's so easy in doctors' offices to get blindsided, react emotionally, and end up crying and unsure of what you even talked about during the appointment.
Now, hear me on this: a ventilator would not be the end of the world. I know that. I know fantastic, happy kids who are on ventilators and/or who have trachs and I know we would all be fine. But I think that even the parents of those kids would agree with me that it's not ideal. Just like I would say to any parent facing a g-tube: if you don't have to go there, don't go.
When, at my urging, Dr. Snarky went into some more detail regarding the report, I found that Collin's oxygen saturation levels had actually increased slightly from the previous study, that his respiration rate had improved, and that his CO2 levels had stayed in safe range. Yes, he still had apneas, but being on a tiny, tiny flow of oxygen is enough to take care of the negative effects of those apneas. So, what's the problem? That's exactly what I asked. I couldn't get a satisfactory answer - only vague, scary allusions to a future in which Collin is unable to breathe for himself. So, after over an hour of pushing and questioning and listening, I took my copy of the report, figured out our next step (a tiny dose of caffeine citrate to try to stimulate the 'respiratory box' in his brain), and got the heck out of there. I cried as hard as I could the whole way home, then got home and cried some more to Kyle. And then we ordered pizza and played with Collin and felt much better.
Dr. Snarky himself actually stated quite beautifully and ironically what I took away from this experience: "As a physician, I want to fix Collin. It's easier to fix things than it is to work with them." That's why our conversation was so long and pained: because the whole time, as he was essentially saying, "There's something wrong with Collin, let's fix it," I was asking, "Why can't we work with what Collin has?" What's easiest is certainly not always what's best. And all Kyle and I want for Collin is the best. While that will sometimes include 'fixing' something (but will never include fixing Collin - he doesn't need fixing), I think it will more often take the harder and more complicated route of working with what we have. In the case of sleep, we think that what's best for Collin is to not consider the ventilator option as long as he is safe under the current circumstances. And what's best for us might be to get our next sleep study somewhere else.