"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

Tuesday, May 19, 2009

Downsized and Capped You Ask??

Why yes, of course!!! See for yourselves:


We went to Dr. P's office this morning and downsized Marissa's trach. For those in the know, she used to have a Bivona 3.5 Neo and now she has a Bivona 3.0 Neo. She was a very good girl for the change and only cried a little. Afterward, we put the cap on her trach and noticed an immediate difference!! She no longer wheezed like she did before. Awesome!!

She now has been capped for about an hour and a half. We are noticing that she is beginning to wheeze slightly and works to breathe just a little harder than normal. We are attributing this to the fact that her airway is still trying to adjust to the change in the trach size and the capping. Remember, she still has to breathe around the shaft of the trach in her throat which, even though it is smaller, is still an obstruction. It is also nap time and I think she is just physically worn out from the activity. We are remaining positive that, if we just give her plenty of time to adjust to the change, she will do well. After all, it took her a while to tolerate wearing the PMV all day and now she wears it like a champ! We just have to work her into this slowly.

We are SO excited for this new chapter in our lives!


On a different note, please keep my friend Michelle and her daughter Lillian in your prayers. Lillian is having palate repair surgery today. For her, this is a step toward decannulation. Please pray with me that the surgery goes well, that she heals quickly with as little pain as possible and can start on the decan road shortly.



The round-the-worlders said...

Wonderful, great, heah, wow, etc.

Glad to hear all the good news. Going in the right direction.

Much love, as always, Arnie and Dad

Nana and PaPa said...

Wow! This is awesome! We will keep our fingers crossed that Marissa continues to tolerate the downsizing and will continue to adjust....she's such a trooper! Michelle and Lillian will be in our prayers that this surgery will also be successful in her road to decan....love you guys!
Nana & PaPa

Janay said...

Wow, Marissa is doing great! It took Milo longer to tolerate the cap that well. In no time she will not even notice it's there :0)
Keep up the good work.

KH said...

How great! So glad to hear!!! You're getting close, now!

Hope said...

Oh my goodness, WTG Marissa!! I got teary watching that. I'm doing a happy dance:)

Queen Mommy said...

So sweet! Fabulous news! Praying everything continues going well. Will keep Michelle and Lillian in my prayers too.

Rachel Marini said...

That is AWESOME!! I am so happy for you and Marissa. I loved the family photos that you had taken also. Beautiful family.

The VW's said...

AWESOME!!! I love progress! And, I love that video of Marissa! She had me smiling again! She is getting cuter all the time! What a cutie pie!!!

John Gensic said...

THIS IS GREAT! I hope she continues to tolerate the downsize. How exciting for you guys! I love to hear her sweet voice.


Colleen said...

She is soooooo cute!! I'm glad she is doing so well with the downsizing.

Tamara said...

Love the video! Good to see her in action again :O)! She looks great and sound good! You CD is on it's way!!! (((HUGS)))

Jessica mommy to Alex/ RTS said...

Sorry Ive been missing, Im just now reading this good news. I hope things continue to go well. Update soon:)

Dana said...

YEa! A step in the right direction.