The Frustrating ENT Visit & the Other Chance Encounter
Posted Oct 02 2008 3:14pm
[Edit to say: Sheesh. This is a saga.]
Well, now that I've had some time to process it, I should probably note right off that in general the visit was fine. Good even in terms of the news they gave us. We so rarely leave the house and I am so rarely pregnant, that I think things got the best of me. Am I milking this pregnancy yet? I don't mean to. But heck if the 1st trimester isn't the pits. I can't wait until week 13 or thereabouts.
Anyhow. The audiologist took us in to do a tympanic test which essentially tests to see how much the ear drum moves when a puff of ear is blown in the ear (with these little cone-like thingies). As with the other two visits to the audiologist the puffs of air registered no vibration.
Then we went into a little audio testing room with another woman who helped gauge Georgia's reactions to different sounds. Since we can't really ask her to say, raise her right hand when she hears a sound in the corresponding ear at this age, the woman came in to see how/if she reacted. We were surrounded by different speakers and a light up little thing with an oinking pig doll and the idea was generally that Georgia would react to the sounds by looking in the direction of the speaker from which the noise was emanating. (Can I explain that any more confusingly? Sheesh.)
Anyhow. She did ok. She looked in the different directions and/or she stopped chewing on her toy, or made wide eyes, and at one point startled at the sound (which was loud) of his voice. There were a couple sounds (the more wooshy ones) that she did not react to, but it almost seemed like she just wasn't interested in those noises. They were more like white noise, as opposed to more interesting whistles and trills.
Anyhow. The audiologist said he felt that because she passed her newborn screening and because she did relatively well in the audio booth that he was not TOO concerned with her hearing and that likely, if anything, there may be some kind of blockage (wax/fluid) which was causing the tympanic reaction (or inaction).
So we went to the room where a resident came in and asked us all the typical questions about her overall health history etc. I like telling people about her history so they know it, but sometimes I wonder why the hospital doesn't unify their charts so that the cardiologist (who is in the same building) and the ENT and whomever else can just pull up her file and have it there. But I digress.
I explained to her that while we were there for her ears, we also had some concerns about her stridor/throat etc. She noted the throat thing, but that will be the end of it. By the time the ENT came in and quickly made his assessment of things it was not brought up again and I don't know, I just blanked on it everything felt so rushed. And honestly, I kind of think this is a GI thing and the resident didn't seem to think it was a big deal, and yes, I realize it's my fault it was not acknowledged again, but sometimes you just lose it in those rush-rush situations. And honestly, other than having the reflux addressed, I am not too concerned with the stridor. She does not have apneic episodes and she sleeps well. It's the ST who has been after us to have the stridor checked out and I am dreading seeing her on Wednesday when I tell her we didn't get much (anything) accomplished...but I don't know. Maybe I oughtn't trust my own intuition so much, but I don't feel like it's really an ENT issue...even though I know the T in ENT stands for throat.
I hope the GI can help. Just to check on things. Ugh. Ok. I feel like crap about the way it all went down. But it all feels so fruitless and futile right now with us moving and everything. Ugh. OK. Anyway.
Also interesting to note however, was that Georgia started crying as SOON as the resident tried listening to her heart. SO unlike her! She wouldn't calm down and she screamed through her heart check, ears, throat...the whole thing. The minute the resident stopped and stepped back, Georgia stopped crying. It was like full on stranger danger mode. This is the first I have seen Georgia do something like that. Which was strangely comforting to me...although I DO quite like a cooperative baby in the exam room. What happened to my cooperative baby?
Anyhow, the resident took those notes and said she would discuss it with the doctor and they would be back in.
THIRTY minutes later in came Danny Pintauro...er...I mean, the doctor...who LOOKED exactly like Danny Pintauro, only, you know, with bright red circular glasses, only they were redder than those ones in that link. I mean red. Like RED. Not remotely glassy or clear. Solid red.
Anyhow. I would have liked to admire his fine glasses a bit longer, but seeing as how he was in the room for all of 3 minutes, quickly poked in Georgia's ears (much to her utter dismay once again) he said he agreed with the audiologist hat he did not think there was too much cause for alarm (and yes, apparently he HAS worked with kids who have DS before and was highly recommended by our ST). He said he did notice that there was some fluid in her ears, but not a lot. He then showed us a chart that showed a normal ear and than 5 stages of ears with fluid. He pointed to the one off from normal and said Georgia had about that much fluid in her ears (in other words not a lot) and that he'd like to follow-up after the winter in 6 weeks.
That brings us to one week after we move.
Which means. We are not going to do it.
Instead. We will get set up with an ENT in Baltimore and take it from there. At this rate it's just a general check up thing to monitor how it goes.
Which is good news I guess. But considering I was there for 90 minutes and spent all of 15 minutes with all three of them...and yeah...the whole not dealing with the throat issue (or potential non-issue)...frustrating.
One good thing was an encounter I had with a woman in the waiting room. She was there waiting for her sister who's nephew was seeing the doctor. She had her son in her lap. He clearly had some kind of condition, but it was only obvious because of his small size and seemingly frail body.
I happened to make eye contact with her before I even saw him and said hi. Then commented on how cute he was when he looked up. He was incredibly cute. LONG LONG lashes! Anyhow she then said, "Can I ask you if you receive early intervention?" Turns out she lives in NY and she is thinking of moving to VT, but is worried about the EI stuff. I pretty much raved about the services we have been receiving and we chatted for awhile.
She is hoping to get back into teaching (secondary ed Social Studies) and is wanting to live closer to her family. She told me the name of the condition her son has which was a long name that I can't remember. I tried looking it up, but can't find any info. Essentially he is missing the tip of his first chromosome. I never said the words Down syndrome or T21 or anything, but she could probably just tell what Georgia's condition is. Her son was a month older than Georgia (and about 10 lbs lighter!). She indicated in Georgia's direction and said, "My bet is they have a lot of the same physical and developmental issues." He also had heart surgery to correct an ASD and VSD (same as Georgia).
Anyhow. We chatted about the various therapies we both receive. And she told me, "Everyone always says he looks so much like me and he does," (he did) "But I went to this convention and it was surreal how much he looked like all the other kids who have the same condition!"
It was true, if he weren't so small I don't think I would have noticed anything different about him. But then she pointed out his flat-ish brow and his unique jaw, and yep, I guess I saw what she was saying. But nonetheless, a gorgeous child.
Well...we were just getting to talking good and I got called into the room. I was kind of bummed. I would have loved to talk with her a lot longer. I should get a business card. You know, something with my contact info that says Tricia, Mom, Blogger, Has a kid with special needs. Can talk. Will listen.