It was a rough day for Wes at kindergarten today. He was late to school because we spent all morning at the ENT doctor’s office, which was a 45-minute drive each way and of course the doctor was running an hour late. He didn’t want to go to school but I talked him into it and left. When I picked him up from school, one of his helpers told me that when she arrived he was in the bathroom crying and asking for Mom. She convinced him to sit and do some work anyway. When it was his turn to write a sentence, the assigned sentence was “Cats don’t fly.” He didn’t want to write it. His teacher said he could write “Wes loves Mom” instead. He wouldn’t do it. Instead, he wrote–all by himself–“Wesley want mom”. His teacher told him that was great and to finish it with a period, and he put an exclamation mark. Rough day but I’m really proud of him too! And I got the best hug from him when school was done.
So, the ENT. Last July Wes had a sleep study, then a follow-up appointment in August with an ENT (Ear Nose Throat) doctor to see if it was recommended that Wesley get his tonsils and adenoids out. It’s a super common procedure for people with Down syndrome. The reason is that sleep apnea is super common, and the #1 way they attempt to help sleep apnea is by removing the tonsils and adenoids. Among typical kids only 1-3% have sleep apnea. With DS kids it’s more like 83% (although I’ve seen a range of 25-85%; it’s a lot more, anyway).
Wes’s sleep study was actually really good, considering he has Down syndrome. He ranks in with mild-moderate sleep apnea (mild usually, but peaking to moderate during his REM cycles). It means he has some obstruction and his body works harder to transport oxygen during sleep, and it’s not always effective like it should be. His oxygen levels during the sleep study stayed pretty good (usually above 80%), but his body was clearly working harder for it.
So in August we met with Dr. Park. He said Wes’s tonsils are huge (8/10) but he didn’t think the risks associated with surgery were worth it for Wes. He recommended no surgery.
Good news, right? Well, yes, but it didn’t sit well with me. I hadn’t heard of any doctor ever telling a child with DS he was better off without surgery. I talked to a bunch of different moms, ran the sleep study by my neighbor who works in a sleep lab, and decided to get a second opinion. Hence today’s visit with Dr. Muntz.
Other moms had already told me that Dr. Park (from August) is more “wait and see” and Dr. Muntz (from today) is more pro-surgery. So I was prepared for him to recommend surgery, and he did. He said that any typical kid with the sleep apnea score that Wes has (like a 4 or something) would automatically qualify him for an adenotonsillectomy. And with Down syndrome, it was no question at all.
The surgery’s success stats are: 33% are cured of sleep apnea, 33% get better, and for 33% it does nothing at all. However, the surgery is MORE likely to benefit someone with more mild obstructive sleep apnea, which is Wes.
I understand that the surgery may help reduce his apnea. It may improve the longevity of his heart and his lungs and other vital organs as he gets older, because his apnea will probably get worse.
But as the doctor described to me what the procedure entails, and I pictured my little Wes unconscious on a table with a breathing tube down his throat and an IV in his arm and something sharp cutting away at his throat I just wanted to cry. I hate to put him through that. I hate it, everything about it.
We talked about risks. The biggest risk post-surgery is bleeding, although he said only one of his patients has actually died from it in his 36 years. (Comforting?) Dr. Park said we lived far away enough that the time it would take us to get back to the hospital (an hour away) could be a scary concern. Dr. Muntz said, don’t worry about it.
So we have to decide what to do about Wes. We are willing to take some time and have another sleep study to see how he’s doing, and then go from there. I know lots of kids do this surgery. But I hate for it to be my kid.
Some fun things Wes got to do:
Push the elevator button to the 3rd floor.
Play x-box (Lego Batman) for an HOUR while we waited for our turn.
Build a house (and knock it down when we left).
See the Oquirrh temple.
Get a celebration smoothie when we were done.
Another cool thing is I met another mom in the waiting room who has a cute cute cute 17-month old with Down syndrome. Every time I see a one-year-old child with Down syndrome it takes me back to when Wes was that age. They are just babies for the longest time, and it is SO wonderful! He was sitting up by himself and so cute. She has a website she created to help point out that there is nothing “down” about Down syndrome! http://nothingdownaboutit.com/ Check it out!