Just a quick update on the afternoon: The ENT had a spot open today so we popped in. He did see fluid in my girl's ears, and believes that to be the reason for her poor hearing test. He immediately recommended tubes and an adenoidectomy but I'm on the fence. The fluid might resolve, since she does have a cold. Let's not go poking unnecessary holes in body parts. But she's also had a cold off & on since she started daycare a year ago - the fluid might never resolve. Let's fix her hearing NOW so she can understand the words we want her to start saying. Could she have had fluid filled but asymptomatic/non-infected ears for a year? gah. I need to read up on the adenoidectomy more but I missed the part where it Cures Everything! Let's not go lopping off body parts without reason. Also, the ENT seemed to jump on the "kids with Ds usually end up with ear tubes" train which rubbed me the wrong way... my big girl actually has petite tonsils and decent sized ear canals, so let's look at THIS patient, not every other kid with a 47th chromosome, m'kay?
Side note: I left the ENT's office feeling a little jumpy and it wasn't till we nearly got home did I realize it was adrenaline. I had swung into full crisis mode over her hearing and showed up to a bridge party. Funny. Or not.
Also, in a bonus two-fer, we got to the hospital early enough to get into radiology before the ENT. Oh my - that was completely painless! We were in & out in 10 minutes. There's a teensy tiny chance I may have over-built that in my head. Maybe next time we'll consider sedating mommy instead of her weirdly cooperative child? And our ped was already calling with the results by the time we got home - She said there's no instability in her neck but the radiologist saw "something" and couldn't answer my ped's questions (which the ped freely shared her opinion about), so they're sending the films over to neuro-radiology at the children's hospital. Love her!
Because the Xray was so fast, we ended up with almost an hour to kill before the ENT so we got a snack, bought a sample size tube of vaseline for $4 (the omni-chapped cheeks have returned with fall!), and wandered around. 93% of the people we passed smiled at my girl. She was chattering away, looking at everything & everyone while holding onto my pinkie - the epitome of adorableness. We wandered by the peri-natal clinic where I first found out she had an extra chromosome. I felt... light. I half-hoped someone would come out as we strolled by and see a mom & her girl, getting some stuff taken care of, but content and together. And maybe they would see her yummy almond eyes and realize that whatever they'd just heard inside those doors was not the tsunami of darkness they thought it was. They could still stay on the beach and play. And laugh. And have someone hold their pinkie.
Yay for good appointments!! We did have the constant fluid thing, and tho Bs speech was fine, I didn't want to risk it. And B has been way less sick in general since her T&A and tubes. We r fans of these particular procedures, and they are so quick and easy that I was glad to get the recommendation.
ReplyDeleteOf course had the end results not been as good and her illnesses quelled, I might have a different perspective. You are well able to make a wise decision for your girl, and you know her best... whatever you go with will be right I'm sure.
I could have written this post. In fact, I think I did. Too tired to check my archives but he had his adenoids removed 12/09 and it was no biggy. I hate the way so many ENTs lump kids with DS together and just assume treatments will be the same. This totally happened with us.
ReplyDeleteBut. I have to say, having Leo's adenoids out did wonders for his propensity to have colds and icky snot ALL winter long.
As for the fluid, you know what? My feeling is, our guys have enough strikes against them. While I am not surgery happy AT ALL, I think if there is a chance that the fluid is hindering speech/affecting hearing, do it. Both procedures (tubes/adenoids) are not a big deal.
yeah, I'm on the pro-tubes bench as well. Abby never had ear infections or anything, but her hearing check at the DS clinic wasn't great, and she ended up with tubes (after a lot of back-and-forth with the ENT). And her speech took off and she was much less snotty and icky. The speech thing might have been a coincidence of timing, but I don't think so.
ReplyDeleteAlso agree that the procedure was not a big deal.
Also think that it's still scary and a big deal to think of doing anything.
Thanks, as always, for the help guys. Comforting to know that it DID help and I'm not just jumping in blindly. You'd think after the heart & eyes I wouldn't be so squeamish about a such a minor procedure! Will email you RK re MDs.
ReplyDeleteI'm with Maya: I could have written this post! So glad to hear that the x-ray was easy. We just scheduled Maybelle's tube-insertion for late November. Part of why I'm open to the tubes is that I had them as a kid, and apparently they really helped me. (I haven't blogged about this, so perhaps I should.)
ReplyDeleteOn the same page as everyone else - what a smart bunch eh? Only adenoids and tubes and big,big diff for amount of colds and length of colds since. I HATE putting her thru unnecessary surgery but these are so straightforward. Ear tubes literally take minutes. I hear tonsils are a bit more trouble for recovery.... But its completely your decision.
ReplyDeleteI hate the way Dr's do it too but our ENT was very adamant- the old "I'd do it for my kid" routine.
Nathan had tubes and my only regret was that we waited much too long!
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