"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, June 16, 2010

What an Amazing Kid!

Marissa has not had any pain meds, including regular strength Tylenol, since Sunday afternoon. That would be only 48 hours after surgery! Incredible!

We have put the cap on her trach a few times for a little while and she tolerates it well. We only leave it on for a little while because we want to give her throat and vocal chords a rest. We have noticed a significant change in her voice. :-( It is much softer and breathier, just like the doc said it likely would be. She also can get raspy pretty quickly. I know it is quite soon to make the determination that this is her new voice, but I have a strong feeling that it is. I know there are things that can be done in the future to help her strengthen her voice, but I still have a hard time knowing her voice will never be the same.

Here is a video demonstrating what she sounds like now. There are times that her voice does get breathier and weaker.

Jeremy and I gave her a bath for the first time last night and uncovered her incision. It looks really good! It is about 1.5 inches long and it is under her right breast. The good news is that, once she develops into a young woman, the scar should be completely concealed.

We will be returning to the hospital on Friday for Marissa to undergo a bronchoscopy. The doc will look for signs that the graft is taking well and is not developing an infection. She will also check the function of her vocal chords, and will measure her airway. She should be able to give us a ballpark time for decannulation. From what she has told me before, we will begin capping trials, with the ultimate goal being that she is capped 24/7 and keeping her O2 sats up. Once we do that, we might do one more bronch and then decan. It is likely this will happen by admitting her to the hospital for overnight observation. Hopefully we can say "Bye-bye trach, hello naked neck!" sometime very soon.

I'll update again after the bronch. Thanks for all the prayers and support, you guys are the best!


The VW's said...

Her voice still sounds adorable to me! What a cutie! I hope you took her outside after she asked so nicely and so adorably! :)

She is quite the girl! Praying she continues to do well and that you get great news on Friday! Hugs!!!

Lacey said...

Her voice does sound different, but its a voice! I wish I could hear anything from Jax, even a cry! I do think it will get a little better with time, just like being intubated for a long time and their voice is gone. I can't believe how fast she recovered. this must be a different surgery than the one I was told Jax needed. They said it would be a minimum 10 day PICU stay! What a rock star!

Candace said...

Awwww! She is doing great! I noticed her opening and closing her little hand..does she do that a lot? Faith does that all the time!

Alicia said...

Candace, when she opens and closes her hand, in this instance, she is doing the sign for outside. She speaks just as well as she signs, and doesn't really need to sign to get her point across, but she does a lot of the signs still. :-) Signing Time is one of her favorite things to watch.

Janay said...

She looks & sounds wonderful. Even though her voice is a little different it is still cute :) When you're feeling down about her quiet voice just give us a call and Milo will remind you that a quiet voice isn't always so bad, hugs!

The round-the-worlders said...

Wonderful to hear her. I actually expected a bigger difference in her voice. I noticed she can still raise her voice. Like Janay said, you might learn to love a quieter voice, but knowing Rissa, I doubt you will get the opportunity.

I love the voice she has, and if she had it from the beginning, you would love it, too. I know you will.

Thanks for the video. Arnie and Dad

Nana and PaPa said...

I hear only a slight change...but compared to no voice at all...it's music to my ears..breathy and soft or not. She is such a trooper. She amazes all of us for what she has accomplished over the last 3 years, exceeding all expectatiions!! Love you all..
Nana & PaPa

ANewKindOfPerfect said...

She still sounds adorable as ever! :) I am glad to hear she is doing so well. That is great news!

Colleen said...

Oooo I'm getting butterflies reading all of this. I am praying that she will become the newest member of the naked neck club soon! Keep us updated.