"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

Friday, September 17, 2010

Someone Upstairs is Smiling on My Girl

Well Peeps, here's the scoop:

After a long, emotionally draining week of waiting for phone calls, not getting phone calls, having to call the Dr's office myself, going back and forth, and thinking we were going nowhere fast, we have an answer.

First, I found out that the soonest the sleep lab in Denver could get Marissa in for a study is October 24th. Yep. October 24th. Pointless if we want to get her trach out before cold and flu season hits.

So I called Dr. P's office and requested a phone call directly from her to talk about a solution to this problem. Ten minutes later, she called me back. She told me that, obviously, that date would not work for us and she had been looking back over the sleep study report from August 27th. She said that she only had one episode of obstructive apnea, which lasted less than 10 seconds, and her sats only dipped below the 90's one time, for less than 5 seconds. She did have "a few" episodes of central apnea, but that can not be helped by having a trach. So, she told me that, after careful consideration, she feels comfortable decannulating Marissa.


This coming Monday, September 20th, we will go up to Denver and Marissa will go into the OR to have a bronchoscopy at 11:30 am. If everything looks good, Dr. P will pull her trach. For good. No more silicone tube in my daughter's throat. No more trach ties around her precious neck.

I am still a little gun shy, so I am going to reserve my full-blown Happy Dance for after I see her without a trach. But, this is the best news we have had all Summer, and we are celebrating this step in the right direction.

Thank you friends and family for all of your prayers last week, and thanks in advance for your prayers on Monday. I love you all! I will be updating as soon as I can, hopefully with some naked neck pictures!

I'm off to have a fabulous weekend, and I hope you all are too!

Please say some prayers for our friend Faith and her Mommy & Daddy. She is struggling after having surgery last month to remove her trach. The sad truth is airway kiddos are always one step away from disaster, trach or no trach, and it is just heartbreaking. Please pray that a workable solution comes soon from her team, so she can get back on the road to recovery, back on the road to being Faith again. Thanks.


Rachel said...

WOOOHOOOO!!!!!!!!!!!!!!!!!!! So excited for you and Marissa!!

The VW's said...

AWESOME!!! I am so happy for you! Praying everything goes GREAT on Monday! Have a terrific weekend! HUGS!!!

Hope said...

I'm so excited for you!! Lots of prayer:)

Shauna Quintero said...

OMG, I'm speechless!I have goosebumps and tears and I'm just so excited for her and for you! I can't wait until Monday!!!

Tara said...

Woot for naked necks!! That is fabulous news Bill, we are so happy for you guys! We'll be praying that everything goes just perfect on Monday.

Love you!

Nana and PaPa said...

We all have waited so very long for this day...We will be praying for all to go as planned. We'll also keep Faith in our prayers. Such a hard row to hoe. Faith is a real fighter just like Marissa, so we'll pray that things start taking a positive turn for her. Let her parents know we'll be praying for her.
Nana & PaPa

ANewKindOfPerfect said...

Oh my gosh! That is AWESOME! I will wait until Monday to jump up and dance with you, but I am going to spend the weekend stretching so I am ready. ;) I am SO happy to read this news!

i will go to Faith's page and check on her.

Just Another Ordinary Miracle said...


I know you are estatic. It is going to be one of the most LIBERATING days of your life. Literally life changing. I am so happy for you.

The day Ivey was decanulated we were in the PICU - and the pulmonologist let me actually be the one to take it out. It was fantastic. Just a few coughs - and life went on with less weight on everyone's shoulders. I want to see pictures - lots of them. Yippeeee. Long awaited and much deserved!!!

Amber said...

YAY!!!!! That is so exciting! I will be praying that everything goes smoothly between now and then and that she does awesome. It is such a great feeling when your kiddo gets decannulated!!!!!

Colleen said...

You SO deserve this decann with everything you and Marissa have been through. I'm so happy for you! I will be praying for your friend as well.

The round-the-worlders said...

I am thrilled. Now on to the next step. I am awaiting the Monday news, cause like you, I don't want to jump the gun. But....enjoy the moment.

By the way, do know how hard it is to read your blog through tears?

We love you all, and we just can't wait.

Ann said...

Great news Alicia. Good luck on Monday. I'm looking forward to seeing pictures of Marissa's naked neck!

Kendra said...

Woohoo! Woohoo! Woohooooooooooooo!

Holly said...

Praying that everything goes as planned on Monday. Can't wait to join you in a happy dance.

Faith said...

Wooooowhooooo! I can't believe it and am THRILLED beyond words. Wish you were at TCH so we could party tonight- we'll be having on one in your honor!

Congrats and making it this far.

Lots of love,
Jen & CO

Anonymous said...

This is such terrific news!! You will be in our prayers on Monday.
Can't wait to see those new pics of Marissa. Love to all Aunt Teri and Uncle Norm

John and Jenna Gensic said...

Way to go Marissa! I am so excited for you guys!