Friday, July 23, 2010

I really just don’t know

So yesterday we went to ENT down at Children’s.  It’s been a whole week and a half since we’d been there last.

And I don’t know what to think.

I felt like I had to explain stuff a zillion times, and they still didn’t get the hang of what I was saying.  I got chastised because I’d let the croup go on from February until now before doing something about it.  Then I had to explain that no, the croup hasn’t been since February, it’s been since April.  And that in February she had problems with intubation. 

They (I say “they”, because I had to give her entire history, even though it’s all in her notes, to both the nurse and to the doctor) said about a half dozen times that she’s been intubated a lot of times (three, to be exact), which is one of those “you think I don’t know that???” kind of things.  They seemed shocked that she’d actually passed her newborn screen (I had to bite my lip to prevent saying “do you think I would have waited this long to bring her in if she hadn’t???”, but that’s besides the point).  They’re also “sure” that she has fluid in her ears, despite the lack of sickness of any type, ear infections included. 

I don’t know.  I don’t want this to sound really negative- I know that there’s something going on with her breathing.  The steroids are helping a lot, but she can’t stay on them forever.  And there’s, of course, a chance that her hearing tests are valid and there’s actually something going on that’s preventing her from hearing as well as she should. 

However.  I really, supremely, very much hate when the phrase “kids with T21 tend to…” slips lips. 

So our plan is to take her in and have three (I think) different scopes done on her to check out the anatomy of her esophagus, subglottal region and beyond her voice box to look for any abnormalities.  His theory is that there’s a subglottal stenosis (narrowing of part of her airway) that was likely caused by the intubations.  He said that once he goes in and finds the severity, he’ll look to see if there’s something he can do then, or have to bring her back later on (this part didn’t make sense to me- if it’s bad, wouldn’t you want to do it then???).  If it’s pretty minor, we’ll have the wait-and-see approach (one. more. time.). 

Before he does the scopes, he’s going to look in her ears really well.  I hate thinking that they’re just going to place tubes because the likelihood of her needing them at some point, again based on her Ds diagnosis.  I made it very clear that I didn’t want tubes “just because”.  If she has fluid, fine.  But if she doesn’t, I’d just assume them leave well enough alone.

Once the scopes are done, they’ll do an ABR (which I had to ask for three different times…).  Assuming, of course, that there’s not “too much swelling” in her throat, whatever that means.  My theory behind this whole thing is to put her under anesthesia as few times as possible (remember?  They reminded me of how many surgeries she’s already had a half dozen times yesterday…).  And seeing as we’re getting no where with audiology, I’m sure that an ABR will be on our “list” for the next six months.  So why not do it now???

Again I say- I don’t want this to be completely negative.  If there’s something we can do for Piper, we’ll absolutely do it.  If it means hearing aids, fine.  If it means constant follow-ups, fine.  But I’d really like to know what that is! 

I don’t feel like I connected with this doctor yesterday, but he’s supposed to be really good, so I’m trying to get over it some.  And it was at the very end of the day, near the end of the week, so I’m trying to give him the benefit of the doubt.  I’d rather have someone who’s an amazing surgeon with so-so bedside manner than someone who’s not so good, but easy to talk to.  I definitely had the feeling that I should have been sporting that tattoo on my forehead again today… 

Anyway- the surgery scheduler is supposed to be calling on Monday or Tuesday next week to schedule.  Probably sometime in August he said. 

I’m. So. Over. It.


  1. Hmmm. Doesn't sound like you're getting much closer to a conclusion :(

  2. So sorry, is there another ENT to try? We love ours. She is aggressive about taking care of things that she sees a little more typically in kids with ds but she doesn't do tubes or anything else just because they have ds.
    If you aren't comfortable with the dr, try someone else.
    Good luck.

  3. Did Piper fail a hearing test? Ella has never had an ear infection, ever, no red ears no nothing, but has had fluid on her ears and not passed hearing tests. She has had 2 sets of tubes, her first ones being at 15 months old, and I swear the kid woke up from recovery babbling away, which she hadn't been before. She currently has 1 tube in and one out, and both ears are still passing the hearing test so maybe we are done with tubes!!! Good luck with all the testing!