"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 13, 2009

Not Good News

A little backstory:

Marissa had her vocal chords scoped by Dr. E back when she was still his patient in Oct. 2007.  At that time, he diagnosed her with vocal chord paralysis.  This was pretty devastating for us because he did not seem hopeful about getting her trach out any time soon.  About a month later, we started seeing Dr. P.  Dr. E brought her into his practice because she is a pediatric ENT, thus the reason we started seeing her.  She scoped Marissa at the end of that year and said that her vocal chords were not paralyzed but rather she had vocal chord paresis.  This is some movement, but it is very limited.  She said that this was not the main concern with Marissa's airway, that it was more the tracheomalacia and the smaller lower jaw that needed to resolve.  We moved on from being so concerned about the paresis and went about our lives, thinking we just needed to give her time to resolve these issues on her own.

Today, Marissa was scoped again by Dr. E.  Turns out the squeak we have been hearing is the fact that her vocal chords have very little movement to them.  When she inhales, they only open a little and she has to breathe through not much more than a slit.  Damn.  He said that she will almost certainly need a major reconstructive surgery to be able to get the trach out.  Double Damn.  

He told us she will need one of three possible surgeries: 1)  Arytenoidectomy.  This is essentially where they would surgically remove an arytenoid cartilage so she could breathe without the trach.   2)  Posterior Cricoid Split.  3)  Posterior Laryngotracheoplasty.  (Stupid Blogger formatting!!)  These last two procedures are where they would take cartilage from her rib and graft it into her airway which would somehow make it stable enough to remove the trach.  I haven't done enough research on these to know exactly how this would work, but Dr. E felt pretty confident she will not get the trach out until something is surgically done/reconstructed.

So, Marissa will obviously not be decannulated (trach taken out for good) in the fall.  Dr. E did not seem comfortable doing this kind of surgery on someone as young and small as Marissa. Not that it can't be done, he is just used to doing it on teenagers and adults.  We will now need to see what Dr. P's outlook is on this and if she can do the procedure.  She is, by the way, on bedrest at the hospital.  Things are obviously serious enough that she and the babies need constant monitoring.  She is not expected to be back to work until later this year.  Your continued prayers for her and the babies is appreciated.  

We also need to look at possibly seeing the world renown Dr. C at Cincinnati Children's Hospital. He is the absolute authority on kiddos with problems like Marissa.   Hope and Ava, we might actually get to meet you!  :)  

At this point, the news is so fresh and it stings a lot.  The thought of putting Marissa through another major surgery is overwhelming and discouraging.  Not that we didn't know that this was a possiblity, in the backs of our minds.  Marissa has shown us anything is possible in her short little life, good or bad.  At least there is comfort in finally knowing why she is squeaking.  I think Jeremy and I just need to let it sink in and then we can move on to the planning stage.

Please keep us in your prayers as we process this new information and deal with deciding where to go next.  Thank you all.


Michelle said...

oh man, my first blog to catch up reading. Oh, Alicia...I'm so sorry. I can just imagine how you must be feeling. You all are always in my prayers.

I was inspired by my sons nurse, so I became a nurse. I'm momma to 4 boys one with RTS, one with T1D. I get my therapy and strength through crossfit and take each day as it comes. said...

thinking of you as you digest this news.

The VW's said...

I'm so sorry Alicia!!! I, along with you, was hoping for good news for Marissa! This sucks! (I tell my husband that this is what I like to hear when something isn't going well. He always wants to fix the problem and I tell him that a big, "This SUCKS!" is what I need to hear. It tells me that he heard me and that he's sorry that things aren't going well and that he understands my feelings and situation.) So, seriously.....This SUCKS! I really feel for you and your family!

I wish that there were an easy fix. I wish that I could change this situation for you! I hate hearing that Marissa will likely have another serious operation and I hate that you, as her parents, have to watch her go through this again!

I'll be praying!!!! And, I'll be thinking of you! Love and HUGS!!!

Queen Mommy said...

Hugs and prayers to you in all the decisions you will be making. You may also (or may not, and that's fine too) want to consider looking into Dr. James Sidman: http://pedsent.com/aboutus/drsidman.htm and http://www.mspmag.com/health/features/topdocs/32407.asp. He is the peds ENT that Lily sees, and my understanding is that he's considered one of the best of the best (at least around here). Airway reconstructions are one of his specialities, as well as mandibular reconstructions. His bedside manner is "interesting." Seriously, I like him a lot, but he will always tell it like it is. Probably one of the best ways to describe his bedside manner is to give you an example...

So, Lily had a bronch to determine whether or not she could be decannulated. Best case scenario was that she would be decannulated that same day, if everything looked good. As is turned out, things did not go well. As he was talking to me following the surgery he said, "Now, Mrs. [insert last name here], I know that you would do just about anything to get that trach out. I know if I told you we could take off your daughter's head, spin it around, and re-attach it, that you would do it if it meant she would be decann'd." At this point, I'm pretty sure my eyes were quite large as I responded, "Well, maybe anything within reason." (lol) This was his opening to discussing an aortopexy with me, which is what we ended up doing 2 months later, and 2 more months later, Lily did get decannulated.

Whatever you decide, our thoughts and prayers are with you. HUGS!

Janice said...

Oh geez. I don't know what to say other than I'm crying with you. That poor baby. I can't even go there just yet so I know you and Jeremy are spinning with this news. I know compared to some of the other special needs children we are so lucky. But it still hurts no matter what. I'll be looking this up on the internet too.

Big Hugs to all of you
I love you guys

Nana and PaPa said...

It's so difficult when your hopes for a near future decann slips away over the horizon one more time. The good news...at least you now know what's been causing the squeek. It still doesn't make it any easier to swallow the news. No matter what decision you make, from what I've read so far, and what I know...you have friends and family praying for ALL of you throughout this decision time. It's so hard to know that Rissa Roo will face one..more...surgery...but she has proven over and over again just how strong and resiliant she is. We love you all and will be praying for you.
Nana & PaPa

Momof5 said...

(This is the biggest hug ever inserted here!) I am so sorry that the news is not how you wanted it babe! Dang it, dang it, dang it!!!!! Primal screaming is good for that kind of news I hear. Just turn up the music so Rissa can't hear you. Jeremiah 29:11 "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you a HOPE and a FUTURE." I know it's got to be the hardest in your life, but you got Rissa because God has infused your heart with the tenacity to persevere. I love ya and would jump on a plane to help you out if I could!!!! (This is another really big bear hug inserted here!!!)

The round-the-worlders said...

Like VW said, I always want Duane to say "Poor Baby" when I need some understanding. So along with her "This Sucks" here is a "Poor Baby". It is hard to have to hear news that you dreaded. We all hoped that things would go more smoothly. However, as you all have shown us so far, when something needs to be done, you all, the three of you, are up to the task. We are here for you in any way you need us.

We know the news was not what you wanted, but you didn't tell us how your little angel did during the exam. How was she? Did she do you proud, again?

And, as always, you are in our prayers. Love Dad and Arnie

Colleen said...

What a downer! Remember that it's ok to vent and cry a little....cry to your hearts content. It will make you feel better! Sometimes I just need a bawl fest every now and then to stay strong.(((hugs)))

Hope said...

Although we would LOVE to meet you, we hope it's under happy circumstances. Dr C is the best. The Larynotracheoplasty is what we're trying to avoid. ((Hugs)) I want to cry for you.

Maybe Marissa, Mikan, and Ava can be roomies on the earo floor? Those poor, poor nurses!