Jonah's pulmonology appointment today:
Good: Doctor was happy that Jonah had no breathing issues after we stopped using Flovent for July/August. He said to continue being off Flovent going into the fall and winter. If Jonah can stay clear of breathing issues, then when he sees him again in May, perhaps we can be done with pulmonology. Jonah also had a breathing function test today which the doctor was pleased with the results.
Bad: Seems like pulmonologist thinks Jonah might need his tonsils out.
Since pulmonology and ENT are always asking about Jonah's snoring at night, I decided to video tape Jonah last night so the doctor today could hear his snoring. Jonah snores most nights, some nights very loudly, some nights not so much. Jonah is a restless sleeper. It is not unusual to hear him knocking at his door, calling out our names, or moving around in his room. Most the time, we wait it out and he goes back to sleep on his own.
What causes Jonah to be so restless during the night? There could be many reasons: Jonah himself is a pretty quirky guy so it doesn't surprise me that he is a quirky sleeper. However, given the fact Jonah has been diagnosed with mild obstructive sleep apnea, the "experts" would say that probably he is waking himself up because of his snoring/breathing while sleeping.
After our last sleep study in November 2017, we met with the ENT. We were told their opinion was 50/50 on whether Jonah should have his tonsils removed. It was up to us since he only had mild obstructive sleep apnea. There was no urgent medical need for removal in their opinion.
They wanted us to do a sleep diary for 30 days and then re-evaluate with them. After 30 days, Jonah's tonsils were not as swollen as they happen to be at the ENT appointment. Andrew and I decided we didn't really think that it was necessary to put Jonah through surgery and have his tonsils removed since the doctors were telling us they could go either way with that decision. And honestly, at that point managing Jonah's Grave's disease seem to take over more of our attention so we never did reevaluate with ENT.
Well, back to today's pulmonology appointment, I let the doctor listen to Jonah's snoring video from last night, and he was a bit shocked that Jonah's snoring is that bad on a regular basis. He feels ENT may want to consider removing tonsils because the way the snoring sounds to him, Jonah may have more than just a mild case of sleep apnea.
Can I just vent a bit about sleep studies?
I have often tried to explain Jonah's snoring to various doctors. That is why doctors have ordered sleep studies for Jonah. But Jonah's 1st sleep study in 2014 came back normal, and his 2nd one in 2017 came back as mild.
Here is the problem though: it is very hard to get a realistic picture of a child's sleep. I understand the need to have all the wires etc, but it is very hard to have a normal night during the study.
Both times Jonah had a sleep study, he actually slept less restless than he does at home (go figure, right?) In fact at his most recent study in 2017, I felt like he hardly snored.
So yes, there is a chance that his snoring has been bad for years, but unfortunately the doctors aren't hanging around with us at night here at home to monitor his "real" sleeping/snoring.
Anyway, I don't really want to think about Jonah having another surgery.
I was a little scared that first night after his thyroid surgery when he had breathing issues. The pulmonologist today thinks that those issues were the result of effects of the anesthesia along with Jonah having obstructive sleep apnea.
Removal of tonsils, he feels, would help make any future surgeries safer for Jonah. But surely that isn't the only reason to have the tonsils removed, right? I mean who takes precautions for future surgeries that may never happen?
To even considered having the tonsils removed, I would have to be convinced that his sleep apnea is a health risk to him on a day to day basis. Given the fact this little guy has been snoring for most of his almost 9 years, do we all of a sudden do surgery now?
Of course, I don't want to make the mistake of not taking this serious enough either. Sleep apnea can be a dangerous thing if left untreated.
Oh, what to do?
I don't know the right answers. I will make an appointment with ENT and see if this time, they are more definitive about if they think Jonah needs tonsils removed. I am hoping we can avoid another "thing" for Jonah. I feel like this guy has been poked and prodded enough in his lifetime, but I also know that tonsilectomy is a fairly common and "easy" procedure so I know I shouldn't complain. There are much more serious health issues that many little kiddos face. Just venting...
FYI: here is a photo of Jonah at his 2017 sleep study showing all the wires etc.
Here is the snoring video:
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