Thursday, March 7, 2013

Medical Update

Abby had three appointments on Tuesday:  audiology, ENT, and feeding therapy.  It was a long day full of information...some good, some not so great.

Audiology was first.  Abby gets her hearing checked every six months because kids with Pierre Robin's Sequence (Abby's secondary diagnosis, since CCMS isn't studied) are at a much higher risk for hearing loss than other kids.  In fact, I just read an article that said that PRS kids have a 77% higher risk of developing significant hearing loss than other kids who have isolated cleft palate.  Some of this is fluid-related, which is usually fixed with tubes, but it can also be because of "interesting" anatomy.

If you've been reading this blog for long, you know that Abby has battled many ear infections.  The anatomy of her ears is especially "interesting" and small!  It makes it very hard for tubes to do their job.  Our ENT finally took the tube out for a few months and put it back in during her last bronchoscopy in September.  She hasn't had any ear infections or signs of drainage since, so we assumed it was working!

The hearing test did not go well.  Abby hearing has worsened in both ears.  The left one is borderline "normal," but the right ear shows definite hearing loss.  If you take a look at this chart, Abby's left ear was 25dB and the right was 40 db.  The audiologist did a tympanogram and was unable to get a good read on a vibration in her right ear.

I have noticed that Abby doesn't respond as consistently when she is not facing me, but it's hard to tell if it's a hearing issue or typical two-year-old-stubbornness!  I just thought she was ignoring me!

When we saw the ENT, his first response was that he was sure she had fluid in her ears.  He took her to the torture procedure room and used multiple instruments to look at her right ear drum.  There was no fluid or wax build-up, but the tube was gone.  I have no idea when it fell out, but it's not there now.  He was able to see a slight vibration in her right ear, so that made me feel a little better.

Our ENT decided not to put a tube in right now because he doesn't think it's worth the anesthesia risks.  He wants to retest her in August.

There are a few factors here that complicate things:

1.  Any time Abby is put under anesthesia, she has to be intubated fiber-optically by a specially-trained anesthesiologist.  There aren't many!  The benefits have to outweigh the risks whenever anesthesia is concerned.

2.  The audiologist was as unfriendly as she could possibly be.  She made no attempt to get to know Abby or explain what she was doing in kid terms to make her feel more comfortable.  Although I couldn't hear anything of what she was saying to Abby, Abby's response leads me to believe that she was having her touch the same 5 or 6 body parts over and over again for 5-7 minutes.  So, who knows if Abby couldn't hear her or was just bored?!

3.  During this time in her speech development, Abby depends on hearing in order to make the speech sounds.

I trust my ENT very much, but I'm concerned from a speech standpoint that waiting could be detrimental to her development.  I decided to talk to my friend Patricia, who is an audiologist at another hospital.  She said my concerns are valid, but that it could have also just been a bad testing situation.  She offered to retest her.  Given that Abby knows Patricia and I know that Patricia would try her best to engage her, I think this is probably the best solution.

I am so grateful that Patricia was willing to this!  I trust her as an audiologist and feel like we'll have a much clearer picture one way or another after this test.  If the test comes back better than the first, we'll know that the first audiologist was terrible Abby just tested poorly the first time.  If the test comes back the same or worse, then I will take the report to our ENT and begin the process of moving forward.  That may or may not mean putting a tube back in, since there wasn't any fluid present.  We may be looking at alternatives to increase her hearing...good thing American Girl sells hearing aids for their dolls now!  :)

To end things on a better note, Abby's feeding therapy went well and our therapist was very impressed with how well she is drinking her Pediasure.  We now have her drinking 8 oz a day and are now starting to also use what was meant for the tube feeds...which means decreasing feeds!!  This is very exciting, as we haven't decreased her feeds since July.  Also, for the first time ever, Abby has been consistently doing consecutive sips!!  Until now, it's been one tiny sip at a time, which means that she gets tired of it very quickly.  She's made fantastic progress with that in the last week.

So....just another turn in the journey!  :) Thanks for continuing to walk with us!


1 comment:

Raelyn said...

Julie....
I have been meaning to read and comment on this Blog post for several days now!! Here goes!! ;)
Wait. What?! Aside from Abby being born with CCMS, she was also diagnosed with Pierre Robin's Sequence? I'm not sure I knew that!! ;)
Sorry about Abby's hearing loss. I, too, have struggled with many ear infections. Because I was a "cranio baby", perhaps? In fact, my right ear has long-ago suffered from hearing loss. But, nobody knows about this except for me!! {Well. And you!!} Having one mostly "plugged up" ear actually comes in handy. When I'm sharing a bedroom with my snoring youngest brother, I sleep on the "good" ear!! An advantage, I tell you!! Hee, hee, hee....;-D
--Raelyn