Friday, April 25, 2008

Bummer

Our biggest fear today was that Hope wouldn't do well with anesthesia during surgery for her ear tubes. By that measure, things went exceedingly well. The girl is tough. She was groggy for much of the afternoon, but seems to be rebounding well.

Unfortunately, today fell short by other measures. The tubes are in. Dr. Frosty emerged after 95 minutes looking like he straggled in from Fallujah and announcing that Hope's ear tubes were his toughest operation yet and her canals are the smallest he's seen.

Ten hours later, he returned to tell us they didn't make much difference in her hearing. One ear, which had severe hearing loss, has slightly improved and is now considered moderate. The other, which was moderate, had no change. That designation sounds better than it is. She still can't regularly hear our voice.

The tests still showed that the inner-workings of Hope's ears are mechanically sound, so she has conductive hearing deficiency: Sound isn't getting into her inner-ear. There's a chance her ear canals could widen as she ages. It's apparently not uncommon for kids with CdLS to flunk hearing tests as newborns and have normal hearing by 2.

So now it's on to getting Hope fit for hearing aids. We hope it isn't as burdensome a process as the tubes. She's a few weeks shy of 6 months and action is paramount.

We're sad, groggy and a bit numb from a long day, but I'm not sure we're surprised. Both Mo and I had sneaking suspicions this may be the result. Still, we allowed the possibility of a quick fix to tantalize and daydreamed about how wonderful it would be if we could take her home to song and mindless chatter that she could hear.

But we know that things are rarely going to be that easy. It stinks. But we're not big wallowers. So we move on and know it could have been worse.

Hope should be home tomorrow. They kept her overnight for observation because Dr. Frosty also stuck some probes down her throat to definitively diagnose her laryngomalacia (floppy airway) and there was some concern about swelling and breathing.

Addendum: Hope did return home on Saturday. She's OK, but cranky. So are we a bit. She may get fitted for temporary hearing aids on Friday, but there's a mountain of paperwork between now and then.

8 comments:

Heidi @ GGIP said...

I'm sorry to hear that the surgery didn't turn out as well as you had hoped.

Anonymous said...

I love your comment that you "move on". I know yesterday was disappointing, but you guys are so tough. Better things are yet to come!

Anonymous said...

Dang. Why couldn't something be easy??? I'm glad you had the Great Rolling Over to mitigate the disappointment a little. Here's to a short route to hearing aids and a lot of rock 'n roll!

Grandma K.

Karen said...

I am glad that the surgery itself went well, but sorry that it didn't seem to improve Hope's hearing very much.
Ben had hearing aids fitted at 5 months old, and don't worry - getting those fitted wasn't difficult at all. The only (slight) delay we ran into was getting them covered by our state's medicaid program.
Hang in there guys!

Anonymous said...

Sorry the surgery did not turn out as you hoped. We are happy to hear that Hope is doing well. Love you guys!
-Mike, Jamie, Connor, and Garrett

Anonymous said...

Bummer is right. I'm glad Hope did well with the surgery though and there's another solution with hearing aids. Give her a kiss for me!

Lots of love-
Aunt Annie

Misty said...

sorry that the tubes didn't seem to help. i know how you're feeling. i cannot wait for the day that mason hears us! i am hoping that there are NO delays with the hearing aids!!

our audiologist and ent won't give mason hearing aids until he has a cat scan.... i am so worried about thie (he is scheduled for the 6th). if he doesn't do well with breathing with out O2 then we have to wait until he seed the pulminary specialist...so that will be at least another month long delay! i know the frusteration you are feeling. we are thinking of you and i can't wait to read that she has been fitted for her hearing aids!

Sonia said...

Sorry to hear that the tubes didn't improve Hope's hearing loss. Natalia is 20 months and we STILL can't get her hearing test done because of her bordeline QT syndrome so I understand the frustration. You guys are awsome at looking at the bright side of things :)