Monday, May 20, 2013

At the Doctor

Max is a noisy little baby.  He sputters and honks as he breathes, and generally sounds like he’s got a terrible cold.  Two times doctors looked at him when he was little (ha!  I love saying “when he was little” about a 4 month old baby!) and agreed that he did have a cold and that was the cause of the noise.  But as we took him to Down syndrome support group playtimes and therapy appointments, folks who knew kids with Down syndrome all said they’d heard this noise before, it’s called tracheomalacia.  It’s caused by a mix of low muscle tone and small pipes, and it’s harmless, if somewhat alarming sounding, and should go away sometime in his first year or two.

So, today was a well baby check, and I was hoping to get this diagnosis (especially the “harmless” part) verified by a real doctor.  I told her how it got worse when he was excited or after he ate and better when he was relaxed.  The noise disappears when he’s asleep altogether.  She spent a long time listening to his lungs.  She agreed that it was probably okay, but wanted to check his oxygen saturation and get a chest X-ray just in case.  And I’ll admit that I kind of smiled and nodded, because I’m not thrilled about giving a kid an X-ray if it’s not necessary, but I don’t want to miss anything, either.

So the nurse came in to check his oxygen.  And she couldn’t get the machine to work.  And we tried another sensor, and another, and then another machine, and then another nurse gave it a try.  And then the nurses tried the sensors on their own fingers and couldn’t get a reading.  Max was getting hungry, because I had it all timed out, of course, so that he’d be hungry right at the time he’d be getting his shots.  So they gave up for the time being, gave him his shots, and let us nurse.  Poor kiddo—there was screaming, but soon enough he was sucking away, and then sleeping.

The doctor returned to try to get an oxygen reading one more time.  She had about as much luck with the sensors as the nurses had.  So, although this was presented as just-to-make-sure, I’m now getting anxious awaiting some sort of a number.  We never did get a good reading.  As Max slept in my arms, the doctor watched his quiet, peaceful breathing.  “You know,” she said, “a chest X-ray is probably overkill.  If you don’t want to, you don’t need to mess with it.”  I don’t mind the messing with, but I’d rather not shoot my baby up with X-rays.  So, no reading, no X-ray, everything’s fine, go home now.

I’m left a bit confused.  For the most part I’m fine with how this all turned out—I didn’t think there was anything wrong with him and we seem to have convinced the doctor of that, too.  On this particular issue I’m feeling good and settled, I’m not thinking we need a second opinion or anything.  But I’m left feeling uneasy because I know there are going to be so many more doctor visits like this.  And I’m feeling completely unprepared to be a medical advocate.

I'm trying to remember that we're not alone in this, there's a lot of help for us along the way.  Sometime this summer we're planning a trip to a Down syndrome clinic, to learn more about Max's health.  We've got a network of therapists and other families that can share their stories along the way.  And right now we have a healthy, if noisy, little boy who now weights 14 lbs 7 oz and is 25 inches long.  We do make big babies around here!


  1. I am so sorry to hear about that visit. Really surprised they could not even get an oxygen saturation level. Sounds like you are already a good medical advocate though and alls well that ends well today. Kristen was a very "noisy baby" too and I called the doctor telling them she sounded like a loud washing machine and is that normal. I too was left with no real answers as well. I get where you are coming from...:)

    1. Washing machine! I will have to add that to my list of nicknames for Max. :)

  2. All I have to say he is SO CUTE.

  3. He is completely adorable! And you're not alone in this medical advocate fog... it's everybody dealing with it. Doctors order tests and we say, "okay," because we're overwhelmed and don't want to miss anything. Like with our little guy... I'm glad he's not my first (or even second) kid because I could authoritatively say YES, we will do that, or NO, I'm not interested in that.

    Another example, though. My father-in-law has cancer, and the doctor says, "he should have radiation." My mother-in-law knows my FIL is dying and that radiation isn't going to do a whole lot of good... So now she has her personal understanding of his situation... and a doctor's opinion/advice... and a whole lot of guilt. If she does it, does she prolong the misery? Does she kill him sooner if he doesn't get radiation? Is she trying to save money, or is she trying to be merciful? One thing from the doctor and all of this stress as a reaction. Anyhow. It's a tough place to be... caregiver. You're completely responsible for this other person, making decisions for them, and never quite sure what to do... or in this case, what NOT to do (chest x-ray)......