"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, October 13, 2009

The Long and the Short of It

OK, so here's the update on Marissa's ENT appointment today.

Here are the answers to the questions I asked in the last post:

1. There will be one of three types of surgical procedures that Marissa will have. Arytenoidectomy; Posterior Cricoid Split with Rib Graft; and Posterior Laryngotracheoplasty with Rib Graft, all of which I briefly described in this post. We won't know which surgery will be done until Dr. P has a chance to scope Marissa. She wants to scope her in the Spring and she will make the decision then.

2. Dr. P can do the surgery so we will stay local, which is great.

3. Unfortunately, the surgery will most likely change Marissa's voice, making it quieter and somewhat hoarse.

4. Unfortunately, the surgery will also increase her risk of aspiration.

5. The procedure will be a double stage, meaning that Marissa's trach won't be removed until after she has healed from the surgery.

Now, on to the subject of a timeline. Dr. P seemed a little hesitant when I mentioned possibly having this done next Spring/Summer. She likes to do these kinds of things when kids are between the ages of three and five. Marissa will turn three in March. Dr. P said it is not necessarily about age but more about size. The bigger, the better. So, Dr. P will be making the decision about whether Marissa is ready for the surgery when she does the scope. She also mentioned that, with the rib graft surgeries, the bigger she is, the more likely it can be done endoscopically rather than it being an open surgery. This, of course, would be the best case scenario. So, she may have the surgery and her trach removed by next summer, or she may not. We won't know for several months. We obviously want to do whatever is best for Marissa, so we are leaving it in the hands Dr. P and, more importantly, in the Hands of the Great Physician.

We are still letting all this information sink in. I am sure I will follow up shortly with a post lamenting the fact that neither choice for the next step feels like a good one. It's what I do. I have to process information for a while, let it sink all the way in and then gripe about it.

So stay tuned.


Nana and PaPa said...

Is it still sinking????? LOL.....GOOD!! I don't see any gripeing posts yet..lol. Anyway, good to hear some answers...which in some ways aren't much in the way of answers...but at least actions to think about.
Nana & PaPa

Queen Mommy said...

One of the hardest surgeries Lily had was her aortopexy, which was the procedure she had prior to her decannulation. Not knowing what to expect is always unnerving. You're in my thoughts and prayers!

DevonLeah said...

thanks for the update :)
Hugs and prayers for you...

Michelle said...

Glad you were able to get some answers. I was kinda hoping against what I know to be true about what can happen to her voice and aspiration risk.

I thought maybe Rissa would be different.

I guess I'm not too surprised by it, but just wishing things wouldn't be that way for her.

What's best for Marissa. God is in control and has a plan in all of this.

Love you,
Auntie Chelle

Dana said...

It's a lot to think about. I think the only way we survive is preparing ourselves for everything.

I stress over ENT appointments as well.

Pray about it!

Hope it all turns out the best possible way for Marissa. I know God will be in it.

The VW's said...

Sorry that you didn't get better news! This is definitely a lot to take in and to think about!

Waiting can be so hard to do! I wish that there were an easy answer and timeline for you! Just remember that God already has all of this figured out for you and Marissa! His plan is best! I pray that He gives you peace and grace as you wait for this plan to unfold.

I'll be praying! And, I'll be here to listen if you need to gripe too! HUGS!!!

Janice said...

Hmmm. That's a full plate. It's good that you have time to make decisions, time to pray for answers.

I just saw on tv a girl whose throat was cut at age 8 and they said she would never speak. At age 27 she sounds fine and has amazed the doctors. Marissa has been amazing her doctors all her life. This child is determined and I think she will sing one day.

Love you guys - Big hugs and kisses.


Hope said...

I don't know how I missed this post. I'm glad Dr P can do it, so you can stay local. Ava's voice is permanently changed also. Lower and hoarse. LTP w/ rib graft is also a possibility for us. (I thought 2 stages meant the surgery had 2 parts - rib graft and LTP until Dr C corrected me LOL)

((Hugs)) Alicia. I know you're digesting everything. How are Dr P's babies doing?