Hey there! Long time no blog, right? We've been pretty busy having lots of summer fun and there hasn't been a whole lot to report (except that I turned 29 since I blogged last), so I haven't taken the time to write for a while...but our pulmonology appointment yesterday changed that!
1. She is ordering oxygen for KayTar.
Based on KayTar's sleep study and prolonged central apneas, she is ordering O2 for nighttime use. It won't ventilate her when she stops breathing, but it will keep her sats higher at baseline and hopefully prevent big desats. Oxygen is generally more tolerated than BiPAP or VPAP, so it is an easier fix. We will also (HOPEFULLY) have her on a pulse oximeter (waiting for insurance to approve it), so we will know if she drops below 90 and won't be flying blind like we are now. The central apneas, strangely enough, match the same type of breathing (or NOT breathing) we see KayTar do during the day. Breathe-HOOOOOOOOOLD-Breathe a few times-HOOOOOOOOOLD. It is a long hold, too, like 30+ seconds. The pulmonologist said she tried holding her breath with KayTar on the video, but couldn't go as long as she did. She said she couldn't tell from the video if the nighttime apneas are like the daytime apneas in that she holds her breath after an inspiration, but it might be the same there, too. That may also mean that the little miss might be needing daytime O2 as well. In the office today, she sat at 90-91 for a while before coming up to 99. When I spot check her with our little pulse oximeter, I often see her low like that for periods of time. The sleep study showed her hanging out at low 90s when awake and asleep. While it isn't grossly abnormal, it is much lower than "ideal" and for a kid like KayTar who is already running on a system with some deficiencies, it may be having a bigger impact on her that it would a "normal" kid. So once we have the pulse oximeter and can get some solid daytime data, if we are seeing desats and lower-than-ideal sats much of the time, she wants her on daytime O2, as well. The catch here is getting insurance approval. Dr. J said it would be much easier if KayTar had an official mito dx, but hopefully we can get it covered anyway.
2. She is ordering an echocardiogram and bubble test, as well as full cardiopulmonary function testing.
She doesn't really know why KayTar's sats are lower than they should be, so she is going to do some investigating before chalking it up to another symptom of KayTar-itis. KayTar will be having an echo to check her heart function and a bubble test to make sure there isn't any shunting or defects that might be contributing to her lower sats. KayTar said, "I get to blow bubbles?!" Unfortunately, no. ;) The cardiopulmonary function testing is evidently pretty involved, much more so than the little PFTs we do in the office. Dr. J said it would be a pretty tiring day for her.
3. Her PFT was abnormal.
KayTar's previous PFTs looked good, but this one had a bit of an anomaly on it. One of her levels was considerably lower than it should have been and the pulmonologist said it is the one part that it is impossible to "fake" or affect by not giving enough effort during the test. So KayTar had to have a breathing treatment and repeat the PFT. The second one looked much better, but the Xopenex made her dizzy and have a headache. :/ The take home from this is that KayTar can't be off her Advair anymore...she's been off for a month or so because her asthma has been well-controlled without it and she hasn't been sick (knock on wood) without being in school, so we were letting her have a break since it seemed unneeded (we've done this in the summer before). Whoops! Guess that isn't the case and she needs to be on it year-round now.
4. Treating for Mycoplasma.
KayTar tested positive for mycoplasma in her last lab panel. Mycoplasma is a bacteria that commonly causes walking pneumonia (but can do lots of other "neat" stuff, too). The labs indicated a previous/inactive infection, but Dr. J doesn't fully trust that to be the case and so she is treating KayTar with 14 days of clarithromycin to rule it out with certainty. However, she has a possible allergy to drugs in that class...she broke out in a full body rash during her one and only course of azithromycin as a toddler. I have never been sure it was a true allergy, I lean towards thinking she was treated with abx for a viral infection and the rash was due to the virus, not the antibiotics...but we've steered clear until now to be safe. The only other antibiotics to treat mycoplasma are quinolones and they are much harder on kids, so we are going to try clarithromycin first and see how it goes.
5. KayTar is funny.
We had trouble finding parking yesterday and KayTar finally said, "I wish we could find ONE parking spot!" and we instantly found one. Then she quickly shouted, "And I wish I had a new car!" Alas, the second wish did not work! Also, a resident met with us before we saw Dr. J. At the end of reviewing the case, she asked KayTar, "Do you have any complaints? Anything I can help you with?" And KayTar said, "Well, I just wish it would stop raining so much so I could swim more!!" The resident laughed and said, "I'm sorry, I just don't have that kind of power!"
So that's that for now...this afternoon we brave the dentist (AGH!) and Thursday we see audiology!