Wednesday, March 2, 2011

On Fixing Things

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.


  1. My first comment is about Snarky: Oh, Western Medical Establishment, with your hands-on fixer-upper mentality... It would be easier, wouldn't it, to just make it better in your eyes. But I'm reminded of a great documentary (that was introduced by a great friend) on the history of birth in our country, and how much better we are in trusting our bodies to do what's right, and when help is needed, to implement that on a baby-step basis, not the level of full-blown intervention simply because we can or want to for simplicity's sake. (Can I say, Good riddance, Snarky?!)

    My second comment is about you: How incredible you are as a mom, as a model to all parents in dealing with Others in concluding what is best for our children. Your insight into your own situations a mere week after the initial occurrence is mind-blowing.

    My third comment is about Collin: Have we told you lately how awesome your mom and dad are? What a gift from God they are to you and all of us in their lives? Thanks so much for being you, little man... We are all better off because of you. :)

  2. Wow. I too have the stone face down pat. I did not realize I was doing it while reading until you said that.
    I agree that a 2nd opinon would be great. We are going to be getting one soon so why don't you email this dr so I can avoid him :)
    Always praying for you all and your sweet boy!

  3. Your ability to sift through all of the medical information you're given and make such wise and reasoned decisions for Collin amazes me. And I liked the detailed description of Stone Face. I feel like I need to start utilizing that...I must say I've typically ended up on the crying route. That is terribly unhelpful. And great news from the geneticist!

  4. Annie - you are awesome! Your ability to digest this information and weigh it against what your gut tells you is right or Collin is the God-given ability to know you son like no one else can. Isn't the whole of life about working with what you have?

    And I REALLY like the idea of having the next sleep study done somewhere else! No one needs a Dr. Snarky in their life!

    Prayers for you, Kyle and Collin. And kudos for putting this news in perspective and moving on to enjoy some pizza and your boy!

  5. I think I had the Stone Face on, while reading your update. I think you are doing a GREAT thing by working with what you have. Often times, like you said, the Dr's want to try and fix the problem. In turn, causing other problems perhaps. I definitely agree that you should get a second opinion elsewhere.

  6. I commend you both for the logic, maturity and grace which youall seem display. I am so proud of both of you! And of course, Lil' C

  7. Your doctor stories are so crazy! I think all of us parents with medically complicated kiddos, unfortunately, have lots of crazy doctor stories.