"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

Thursday, July 8, 2010

Wait and See

We got some great news from the bronch yesterday. There is absolutely no malacia, no granulation tissue, and she is not collapsing at the stoma. Hooray! The doc said her airway looks beautiful, aside from some swelling, which she still thinks is what is causing the squeak. I asked her if there is anything else we can be doing to reduce the swelling and she said no, we just need to wait and see.

I have a few ideas though. We have been capping her at night instead of using the cool humidified mist she used to use. She has been doing very well with the cap at night. Now that we know she can be capped at night, I think we will go back to using the cool mist to to see if that helps with the swelling. I also wonder if she is refluxing and the Zantac has stopped working. I am going to email Dr. P with this idea and ask if there is some other med that we can use, just in case this is the problem. I also wonder if capping her all day is possibly contributing to the swelling and irritation, since she is having to breathe in and out around the trach tube, so we are going to try using the PMV during the day to allow her to at least be able to inhale through her trach. Once again, we know she can tolerate the cap, so going back to the PMV will not be a step backwards. I may be grasping at straws here, but I'll do whatever it takes to help Rissa move on past this stage in her life.

Dr. P said she is still hopeful that Marissa will decannulate by the end of the Summer. The catch is that it will probably be done in Denver. She wants to give Rissa plenty of time to get the swelling down and her last day here is August 13. She starts in Denver on September 1, so we will most likely be admitted to TCH and decan up there. I really don't care. We'll go to Abu Dhabi if it means she gets that tube out of her neck!

So now we play the waiting game. I've been playing for the last 3 1/2 years and I have found I am not very good at it. Oh well, I'll just keep playing, I guess.


Michelle and Sean said...

Oh good I hope its just a little swelling. I will keep praying for you guys!!

Marissa looks adorable in those pics!!

Shauna Quintero said...

Yay for no squeak! I can't believe she is going to be trache free by the end of summer!!!

That's amazing!

You are such an awesome Mommy to Marissa and I know you are going to be kissing that naked neck very soon (and with no complications). ;)

Queen Mommy said...

I will keep you guys in my prayers. As I see you walking through this, I'm reminded of our ups and downs the year Lily was decannulated.

I hear the surgeon tell me "Now, Mrs. [Queen Mommy] I know that if I told you I could take off your daughter's head, spin it around, and reattach it, then she could get her trach out, that you would want to do it...."

"...without an aortopexy, there is no way Lily will get her trach out before school age."

"....I've seen kids with worse malacia do just fine without a trach. Let's just pull it and see."

Which is basically what happened. Lily still had some degree of tracheomalacia, but it was much better after the aortopexy (and subsequent removal of loads of scar tissue in her chest wall). She had a T&A, recovered, and we pulled it. She did fine.

After hearing about your experience (and those of other trached kids) where sleep studies and other things are involved, it almost seems like our ENT had a very laissez faire attitude about the whole thing. But, I know that he's considered to be one of the very best, and if he'd had any concerns about decannulation, we would've waited. Still, at the time, it was very much a "Well, let's try it and see how she does" presentation.

I have a feeling that when the time comes for Marissa to be decannulated, which IS going to happen (hopefully in the near future), she's going to do great.

The VW's said...

What a silly and cute girl!

I'm so happy for you, that you got great results yesterday! Praying the squeak goes away soon and that the trach can be removed very soon!

Patience has never been a strong point of mine either! Hope the time goes fast for you! Hugs!!!

Ann said...

Alicia - I think your ideas of putting Marissa back on cool mist at night and using the PMV occasionally make a lot of sense. I agree, you know she can tolerate the cap, so it's not a step backwards by trying some things that might help with the swelling. It really does sound like things are moving in the right direction and Marissa will be trach free very soon. Yippee!

Hope said...

I'm so glad the bronch results are good! ((Hugs)) I hate waiting too.

Nana and PaPa said...

Patience?? Patience??!!! Patience my foot!!! ROFLOL....I have NEVER known you to be patient...even as a child! So...why should this be any different?? LOL....not sure you'll ever learn patience because I'M that way STILL and I'm MUCH older than you! So I don't hold out a lot of hope for you learning patience any time soon...lol. All kidding aside, I think there is a light at the end of the tunnel (summer) on decannulation. Just keep busy (as if THAT'S a problem...lol) enjoy the summer and we'll pray for continued positive progress throughout the healing process. Love you guys..hugs and kisses from us to little Miss Sassy Pants..
Nana & PaPa

Lacey said...

Ugh, don't you just want to pull that tube out now? I'm not a very patient person either, but you'd think we would be after the ride we've been on with our kido's

Colleen said...

I hate the "wait and see game." I really hope and pray that she will get that tube out very soon! No more squeaking Marissa!=)

DevonLeah said...

oh the waiting game!! cant wait until the decannulation wait and see is over for her!!! in time...but I am glad things "look" good down there. Hang in there...I cant imagine how it seems to go on and on and on for you all....((hugs))