We drove up to Buffalo again this morning to have Matt's pH probe placed. His supraglottoplasty failed and he still has sleep apnea, so we need to work out the reasons why he still has poor sleep and respiratory issues during sleep.
During his last laryngoscopy, his airway was very red and inflamed. Since he has the laryngomalacia, a presumptive diagnosis of reflux was made and he was placed on Prilosec. A very conservative supraglottoplasty was done (just trimming one floppy side instead of both).
Since he still has apnea, we need to accurately determine if he has airway reflux before considering any further steps. Since he has never been formally tested for reflux, we were told to take him off his anti-reflux meds a month ago. This morning, a probe was placed to detect reflux in aerosol form in his upper airway.
Placing the probe was, of course, an awful ordeal. No child wants to have a tube placed up their nose and down their throat. I won't go into detail, but let's just say that four nurses were involved, along with a papoose board and a lot of tears. Fortunately, the probe was placed quickly and in one try. Once it was in, Matt was fine.
We went home and he's been building a big Lego airplane we bought for him. Thank goodness for Legos.
We return in the morning to have it removed. I haven't actually seen any reflux events, so it will be good to determine if he actually has reflux or not. If he doesn't, then he doesn't need to take medication for it. In addition, revision surgery for his airway would be much less risky.
We'll see what the data shows.. we will get the results on December 4.
4 comments:
Brave Matt! I think I'd have a hard time with them doing that to me, and I'm an adult!
Hope you get an accurate diagnosis/information from the test,
Julie
Thank you for this post, and especially the photo's. We used them just now to prepare our 6-year old for what to expect. :-)
Thank you for this post, and especially for the photo's. We used them just now to prepare our 6-year old for what to expect.
I hope your six year old does well, Evert. The placement was particularly difficult for Matt, though thankfully that part of the process was short. Once the probe was in, the rest of the day was smooth sailing (so to speak) - the information was particularly valuable as we found he has severe reflux at night, but not during the day. Prior to the probe, he was on Prilosec (once per day) in the morning. After the probe, his medication was changed to Nexium and the dosage increased due to the severity of reflux, and the timing was changed to the evening hours.
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