Showing posts with label hospital. Show all posts
Showing posts with label hospital. Show all posts

Tuesday, June 7, 2011

Do you hear what I hear?*

Well, apparently not. 


But let me start at the beginning.

We woke up bright and early to get everything in order and arrive at the hospital just before 6.  Maya occasionally was signing for food, water, and milk, but mostly entertained by my wallet, initially:

Daddy, is it just me or is this room very familiar?

And she had fun riding around in the car, too.

clapping her hands in the car

When it was time to change into the surgery pj's, we had a realization:

Mommy, these things actually fit!  I must have gotten a lot bigger! 

For comparison's sake:
These are way too big!  April, 2009 (11 mos old)

Getting closer, but still baggy . . .  March, 2010 (1 yr, 10 mos old)

Hey! These fit! I'm a big girl!  Today, 3 yrs old.

After the pj's were on, she was off and running (what a change from our previous hospital trips!).  We spent a lot of time following her around . . .

 . . . and then she tried to make a break for it .  .  .

It was my turn to take her in to the OR (we've alternated) and man, this time was tough.  She fought and fought against the mask on her face, lasting a good, solid, painful 15 seconds before giving in to sleep.  While holding her down and whispering in her ear, the mask must have slipped a little and I got a mouthful of the gas----which tastes totally disgusting (poor kid)---and a nurse saw me pull back and grimace and rushed over with a chair.  It made me wonder how many parents have accidentally gotten too much gas and got dizzy (I was fine and didn't need to sit). 

The procedure took a full two hours, and our ENT called up to the waiting room halfway through to update us that she was doing well and things were progressing nicely. (I can't say enough good things about our ENT--Jay Dolitsky--seriously---if you're in the NYC area and need a pediatric ENT, he's the guy for you)  He checked her ears and cleaned out a clogged tube, then the audiologist (Jessica) did the ABR.   As soon as she was done, Jessica came upstairs to meet with us . . . and when we went down to recovery we met again with the ENT.

(Summary of the findings and next steps at the bottom of this post)

When Maya woke up, she wanted cuddles from Daddy, and to rip out her IV. 

A word with Dr. Dolitsky was all it took to get the IV removed right away (historically, it's taken 3-4 hours before she's drank enough to convince them to remove it) . . . and as soon as it was out, she relaxed a little and drank away.

In recovery I was just too busy to take pictures, so that's all we've got.

So here's the summary:  She has "mild hearing loss" in both ears.  Both ears.  I was kind of shocked----if anything, I was thinking that we would see left ear trouble, but not both.  Jessica said "The test took a long time" so I'm guessing that they might have seen some weird data, but I won't know more until we meet with her again (sometime soon).  Dolitsky & Jessica agree that hearing aids are the most logical next step, although we don't know how long they might last for----we may feel like they're making a difference and keep them, we may not see any change and not keep them for too long.   They have seen older children with the same degree of hearing loss who have benefited from hearing aids, and others who have functioned fine without them.

In the past week, I've repeatedly questioned going through with this test, and whether it was a necessary procedure.  I can say to Maya "What sound does a "B" make?" and she'll chirp "Ba!" from the other room.  I had been thinking: If she can hear the difference between me saying "B" instead of "D" or "P" from the other room, her hearing must be fine.  But apparently not.


I'm sure with a little time I'll have embraced the hearing aids.  Truth be told, there's a part of me hoping for a miracle moment---the hearing aids go in, Maya looks around in amazement and says "Mama!  Wow, what a difference!"  (well, maybe not quite) It will be incredible if these help to make a difference in her speech, and if they help to change the quality of her hearing.

But I'm also a little sad. 

And the pity-partying part of me thinks: "She already has enough chips stacked against her.  I hate that she'll have devices in her ears and devices on her feet . . . from head to toe she needs technology to function 'normally'."

And the part of me with more perspective says "Oh, shut up, Dana.  She has splints . . . and they help her walk better.   She'll get hearing aids . . . and they'll help her hear better.  What in the world are you whining about?  Oh, and ps---it's not like anything has changed.  She couldn't hear perfectly yesterday, she can't hear perfectly today---and at least now you can help the poor kid out."

Yeah, I know.

(By the way, don't even get me started on the fact that I'm pretty sure the ABR done when she was 3 months old wasn't done properly, and we should have known about this right from the start.)

So, hearing aids.  They're coming down the pipe.  I have literally no idea what to expect (I keep picturing her with double bluetooths, but I don't think that quite right). 

Oh, and today's discharge orders were very specific:

Obviously alcohol and sexual activity are not applicable.  Good to know that reading, watching tv, and washing her hair are all acceptable activities . . . as is driving?  Driving?  And it looks like the jury's still out on nose blowing.  So driving is in, but nose blowing is questionable.  Good to know.