KayTar saw her new pulmonologist for the first time today. We've been WANTING to see this doctor for about 6 months, but had to wait for the kids' insurance plan to switch over. She has a reputation for being thorough and really good for kiddos like KayTar who don't always fit into the regular little boxes. Our main concerns were:
1. KayTar's weird halting/breath-holding breathing pattern. (Even BubTar tells her "KayTar, breathe!" when he hears her doing it. It isn't just something we see at home, her OT has asked us about it several times, because she does it frequently during therapy.)
2. KayTar's possible desats that we've seen on pulse ox. I know that these little fingertip pulse oximeters are not great and it may be inaccurate desats, but I feel like it deserves some consideration.
I was not disappointed today. She WAS very thorough, perhaps more thorough than I was expecting! As a side note, I guess that KayTar now carries a label of myopathy in her file, which I didn't realize until she said, "With her having a myopathy, it is important to take this seriously." Good to know! I guess we've moved from unspecified metabolic disorder to unspecified metabolic myopathy? Not a huge leap, but interesting!
3. KayTar's sleep study results which I felt were kind of brushed off by the other pulmonologist we saw. (I think his official advice was "Don't worry about it and stop checking the pulse ox.")
She ordered x-rays of KayTar's chest and lateral neck today to be sure there are no structural abnormalities (in the heart, lungs, trachea, ect.) contributing to the weird breathing business (which she referred to as apneustic breathing), which we had done today after the appointment.
She ordered labs (VBG, basic metabolic panel, IgE, CBC w/diff, and a few tests for aspergillosis) which we will have drawn tomorrow since she has another specialist appointment tomorrow and they may want labs, too...we don't want two sticks when we could get it all done with one tomorrow! Some of the labs are just for ruling things out (aspergillosis) or general information. The VBG is to check her CO2 status, because she had some mild hypercapnia on her sleep study. If it comes back with elevated CO2 levels, then we may have to get an ABG (eeek!). I'm kind of hoping we can figure things out without taking that step.
She is also requesting that KayTar's neurologist adds brain stem imaging to her upcoming MRI (I haven't written about this yet, but I'll get to it soon) because that type of breathing can be caused by a lesion in the brain stem. I don't think she really thinks this is the problem, but again, she is thorough. She said that if this is the problem, usually they breathe this way all of the time and there are times that KayTar does not breathe in this pattern.
We follow up with her in 2 months and will move forward depending on what, if anything, is discovered in this first round of testing. She also wants a repeat sleep study in her sleep lab later this year, because they have redundant measures of CO2 levels which will paint a better picture of KayTar's actual levels during sleep and because the pulmonologist herself is who reviews the data that is collected. All in all, it was a good first appointment. I feel like our concerns were heard and are being taken seriously even though KayTar is somewhat in a gray area with these vague and unusual kind of respiratory symptoms.
|Rainy day reading gear on the way in.|
|Princess Ladybug has a PFT.|
|Someone spotted a homeless sock monkey as we passed the gift shop and suckered me into it. ;)|