Tuesday, December 18, 2007

One Day He'll Win the Lottery

After worrying about his coughing all weekend, we were finally able to get Landon to the pediatrician yesterday morning. The nurse saw his wheezing and retractions (a sign of respiratory distress when the baby is pulling the chest in at the ribs below the breastbone), and immediately got an oxygen saturation reading- it was 93%, definitely too low. The doctor came in and diagnosed him with tracheomalacia, an "extremely rare" disorder where the windpipe is floppy and closes completely after each breath, making it harder for him to take the next one. In Landon's case, the extra mucous in his respiratory system because of a little cold (he's had a runny nose) created a terrible, choking-like cough as the trachea collapsed on the mucous. Which is why the cough sounded so awful even though he didn't seem very sick (no fever, no change in temperament). She said it usually resolves by 18-24 months of age, but in rare cases requires surgery to place a stent in the trachea to keep it open.

He had two albuterol breathing treatments which did NOT go over well. I think the mask freaked him out, but at least all the crying made him inhale it well- his oxygen saturation was back up to 99% when we left. We now have an albuterol inhaler with an aerochamber to give him every 4 hours for the next two days and then every 6 hours until his retracting improves. He's also on the steroid prednisone for 5 days. He seems much better today and only coughed a few times last night. I'm so glad to know what's going on, and I'm even more glad it's not some serious respiratory infection I found during my late night googling, but man- how many more "uncommon" disorders can this kid have? He's five months old and was born a healthy weight at 36 weeks but still had RDS and de-satting episodes for 12 days, he had an undescended testicle, then digestive problems with everything but alimentum formula, then he had severe acid reflux, then unexplained chest fractures, then a mysterious bump over his eyebrow (that appointment is on Thursday), and now tracheomalacia. Some of those are more unusual than others- but all in one 5-month old baby?

As Maya said when I told her the latest, "someday he'll have something rare that's good!"

19 comments:

  1. Aw LL - I'm sorry. Poor guy can't seem to catch a break.

    ReplyDelete
  2. Poor baby. I hope he gets all better by Christmas. The first year is tough. It seems like they catch every germ.

    ReplyDelete
  3. While the trachea issue seems really scary, it does resolve itself most of the time. My cousin's son had a pretty severe case (had this odd wheeze), but he's perfectly fine now and never had to have the surgery. Good luck to the little pumpkin.

    ReplyDelete
  4. Holy crapoly!!! That's horrible, but better to know than not. :( Hope his phlegm gets better soon. Too bad he's not older. Mucinex works great for Pumpkinhead at keeping the thickness at bay.

    ReplyDelete
  5. I am a big blog stalker comming out to help calm your nerves maybe :) My sisters little girl had that when she was a baby and grew out of it. She had to go to CHOP and get checked out and they told her she would grow out of it and she did by the time she was about 18 months! While it is rare, its more rare to have to have corrective surgery, keep your head up, I am sure Landon will be fine :) Happy HOlidays!

    ReplyDelete
  6. Poor Landon! Apparently this is the karmic price for being unbelievably cute.

    ReplyDelete
  7. The poor thing! I hope he's better in time for the holidays - hang in there!

    ReplyDelete
  8. That is a lot in 5 months! Maybe it is all coming now and he will be super-healthy as an older child. My kids have all had to do the nebulizer in the past. The nurse at our pedi's office told us we did not have to use the mask on babies--just to hold the part releasing the vapor under babies mouth and nose and he'll breathe in most of it. It works for us. We keep albuterol on hand and start breathing treatments as soon as a cough gets started--it has saved us many sleepless nights and copays at the doctor's office. Good luck restoring him to health!

    ReplyDelete
  9. oyoyoy! 2008 is so gonna be your coasting, fun year of good surprises.

    (glad you know what's going on and that you got help instead of nightmare this time...)

    ReplyDelete
  10. I've been lurking for awhile, but was reading an article today and I thought of you. Reader's Digest (one of those random things in my mom's bathroom), had an article on a genetic disorder called "Osteogenesis Imperfecta". Basically, in the article, the parents of this little girl had their child taken away because of unexplained, healed-over bone fractures. Kids with OI also experience other physical symptoms, including respiratory issues and seemingly weak immune systems.

    I don't have any idea if anyone had mentioned this disorder to you, so I wanted to throw my two-cents into the ring and bring the condition to your attention in case you'd never heard of it.

    It sounds like a lot of the symptoms are something Landon has struggled with.

    Anyway....sorry for the long comment. Just wanted to mention it.

    ReplyDelete
  11. Poor Landon!!!

    Curious Girl had to have nebulizer treatments for several years, and our pediatrician always said that we could simply hold the little attachment near her mouth/nose and let it blow by that way. It wasn't until she was about 4 that she would happily sit for the mask. (We made up a family song to the Superman theme that we always sang while nebulizing, and at another period we would put on a short video while nebulizing, and both distractors seemed to help). So hopefully Landon will find his albuterol groove.

    ReplyDelete
  12. Poor kid. I wonder if the bone issues and the issues with the trachea are somehow related? Because the trachea is held open by rings of cartilage, and cartilage is related to bone. I wonder if the same thing that made his bones weak has made his trachea floppy?

    ReplyDelete
  13. Poor little guy!

    ReplyDelete
  14. Aw, poor kiddo... but at least this is something he should grow out of. And I really think karma has something fabulous in store for you in the near future!

    ReplyDelete
  15. My son had the soft trachea when he was born. He grew out of it with no intervention...and just my knee-jerk reaction...if Landon hasn't had problems until now that he's had a cold I'm thinking he'll grow out of it and be just fine too. Sometimes it seems like everything just keeps piling on with your kids, but I promise they will survive and be happy! My kids have survived a grand total of 14 and 12 years now!! And Merry Christmas!

    ReplyDelete
  16. poor little guy! at least he'll grow out of it!...and hopefully without the surgery.
    I know it sounds weird, but my two Boston Terriers have the same sort of thing...their tracheas collapse and they do this weird coughing thing...except they really don't grow out of it (and their coughing fits from it are too few and far-between to warrant surgery).

    ReplyDelete
  17. oh, and I'm sure you probably already read up on the Osteogenesis Imperfecta already...but just in case you've been very busy loving that little boy and visiting with your family, I found the OI website to be very helpful. Like Jess said, it might be worthwhile checking into, especially since OI seems to have a very large range of severity.
    http://www.oif.org/site/PageServer

    ReplyDelete
  18. Jess and Colleen,

    Thanks for the OI info (and the OI foundation does have a great website). Landon is being tested for it- he had blood drawn in the hospital, but it's taking 2+ months to get results back because the lab is having technical issues (because NOTHING can come easily in all of this!). He does have blue sclera which is an OI indicator, but doesn't have loose joints which is apparently a bigger indicator (all things the geneticist told me at the hospital). We're anxiously awaiting the results- no doctor thought that was what he had, but you can't help the nagging feelings and it will be good to have something else checked off.

    I'll keep you updated!

    ReplyDelete
  19. Hi! I'm posting blogs about my little guy too.....good to get some more feedback on tracheomalacia.....my son is four constantly hospitalized, oxygen at home....just diagnosed with tracheomalacia...we and his specialists feel albuterol collapses the trachea for these little guys...using atrovent now with what seems like more success-
    tracyboyd3@comcast.net

    ReplyDelete