"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

Monday, July 5, 2010

Sucktastic!

Well friends, we will be headed to the hospital sometime Wednesday for Marissa to have a bronchoscopy to try to discover the source of the squeak. Either the steroids are not working or allergies are not the problem.

We were very optimistic, especially Friday night. At that point, she had been on the steroids for 24 hrs and we started to hear some positive changes. The squeak was still there but not as loud. Really only a slight change, but we thought she could only improve from there. Well, since then there has been zero progress. The squeak is still there.


I am trying not to be discouraged, but it is very hard. Honestly, every time I hear that damn squeak, a little piece of my heart breaks. I just feel it is time for Marissa to catch a break and get that tube out of her neck! Enough surprises and setbacks already! Enough!


I will call Dr. P's office tomorrow to find out what time we need to be at the hospital. I don't really know what to hope or pray that we find right now. She may have some granulation tissue that can be lasered out. She may have some malacia, either tracheal or laryngeal. She may be collapsing at the trach stoma. We may not find the source of the squeak.

I'll update again when we hopefully get some answers on Wednesday. Please just pray that we can find out what is causing the squeak, that it can be easily addressed, and that we can still stay on track toward decannulation this Summer/early Fall.

Thanks.


13 comments:

ANewKindOfPerfect said...

I hope that the scope shows the Dr's where the squeak is coming from and that it's something easily fixable. I agree that Marissa deserves a break!

The VW's said...

This stinks! I'll be praying for her and you! Hope you get great results on Wednesday!

That shirt is PERFECT for Miss Marissa! So cute!!! Hang in there Momma! Love, Hugs and Prayers!!!

Colleen said...

Praying!!

Nana and PaPa said...

I know for all you all have gone through you get easily discouraged when things don't go the way you want them to. Just a word of caution...don't put the cart before the horse on this one. OK...the steroids don't seem to be doing the trick. But you trust Dr. P completely, so trust her on this one that she will figure out the problem AND a workable solution. Don't try to second guess what the problem is BEFORE you know...because to do so you're going to drive yourself nuts between now and Wednesday...and you're already crazy enough as it is!!! LOL This isn't the end of Marissa being de-cannulated by any means...it's just a hiccup in the system..that's all. In with the good air....out with the bad air....aaaahhhhhhh...it will be OK....
Love,
Nana & PaPa

Nana and PaPa said...

P.S. LOVE the stars for 4th of July!

Shauna Quintero said...

First of all, Marissa is a rockstar.

Second of all, I'm praying for answers for you. Or if you don't get answers, I'm praying that it's just too insignificant to need an answer.

Third of all, I totally know what you mean about a part of you dying every time you hear a squeek. That's how I feel when I see Christian's jerks. Whether they're jerks or squeeks, they suck!!!

P.S. Marissa has gorgeous hair, I just had to say it.

((HUGS))

Candace said...

I can't imagine how frustrating it must be! Sending our prayers from SC, for some kind of news.

Lacey said...

Hopefully they find the source of the squeak, or maybe its best you don't find anything! I still wonder if it will just go away when the tube is pulled out. Praying for some good news!!

Fiona said...

I am loving the t-shirt in the second photo!
And although I don't know you personally, jut one look at Marissa and I know she will be decannulated as and when the time is right. A girl like that will just make sure it happens on 'her' terms, and is never straightforward!

Michelle said...

Are you sure you can't move to Indiana? Nutjim.

TherExtras said...

Hoping for the best of all outcomes from the scope for Rissa Roo.

(Love the Shel Silverstein quote at the top! Might have to use it, too - will give you a nod for showing me.) Barbara

The round-the-worlders said...

Lots of prayers coming your way from west side of Colorado. We also hope the issue, not problem, will resolve itself when the trach comes out. Hope everything continues to move forward, even with the occassional backward steps. We are still hopeful that everything will work out find.

Hang in there. We are totally with you.

Love, Bubby and Zeyda

Michelle and Sean said...

I am praying that everything works our for Marissa. I totally understand your worry and frustration.

You guys are all in our thoughts and prayers and we look forward to a great update from you!