"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

Wednesday, March 11, 2009

The Light at the End of the Trach Seems Further Away...

Well, I took Marissa to the ENT yesterday.  Everything is fine, but I walked away with a strong feeling of disappointment.

I guess I'd better give a little back story first.  Marissa was originally trached May 9, 2007 for a number of reasons.  The repeated intubations had caused some swelling and damage that would not heal until she was able to get the vent tube out of her throat.  She also had tracheomalacia. This is where the cartilage in the trachea is not fully formed and is floppy.  It allows the trachea to collapse and obstruct airflow.  Kids usually grow out of this and it takes anywhere from a couple of months to a couple of years.  Marissa also has what doctors call a Pierre Robin type lower jaw.  In her case, her jaw forces her tongue back into her airway, especially when sleeping. This condition is also one that she just needed time to grow out of.  As of last August, all the issues Marissa was trached for had resolved except for the lower jaw.  Dr. P told to let Marissa grow over the Winter and we could see if the lower jaw issue had resolved  and possibly decannulate in the Spring.  If her jaw had not grown enough, Marissa would need jaw distractors and would not decannulate until the Summer of 2010.  Jeremy and I, as well as Dr. P, have been pretty confident that we have noticed Marissa's lower jaw growing significantly over the last year and chances were pretty good for a decannulation this Summer.

OK, enough history, on to our appointment yesterday.   First, I am concerned about Marissa's doctor.  She is not seeing patients right now because she is on bed rest.  I did not ask for what, but I am assuming pregnancy.  I hope and pray that everything will be all right with her.  Marissa's ENT is one of our favorite doctors.  She loves Marissa and the feeling seems mutual, which is saying a lot on Marissa's part!  She doesn't like ANY doctors!  Dr. P genuinely cares about Marissa and her overall well-being and health.  Please pray with me that she will be OK and back to seeing patients again soon.

Because she is not seeing patients, we had to see a doc whom we have never met before.  We met him yesterday and he seems nice enough.  I spoke to him about Marissa needing her tonsils and adenoids taken out.  He looked down Marissa's throat and confirmed that she would need a T & A.  (tonsillectomy and adenoidectomy)  He said he could do the surgery or we could wait for Dr. P to come back.  He made sure to let me know that no one knew when she would be back.  I told him we would like to have it done sooner rather than later, knowing Spring and Summer are on their way and she will need the procedure before she is able to get the trach out.

There is  a general consensus among doctors in cold-weather states that decannulation (taking the trach out for good) is reserved for the warmer and healthier Spring and Summer months.  If we do the math, we only have about 6 to 7 months, at the most,  to work with as far as decannulation goes.  She will have to recover from this latest surgery, and then have her trach capped (so she breathes exclusively through her mouth and nose around the tube) 24/7 for any where from 1 to 3 months.  This timeline is based on the best case scenario that her jaw has grown enough.  Even then, this doctor said he would not feel comfortable decannulating Marissa and wants to leave that decision up to Dr. P.

To complicate matters more, Marissa was diagnosed at birth with a condition called Choanal Stenosis of her left nasal passage.  This means that her left nasal passage is narrowed, the doctor estimated about 70%.  While he said at the time that this was not significant in relation to her breathing problems and was not a reason she needed the trach, she would need it repaired at some point in her young life, maybe around age five.  

It is common knowledge among trach parents that surgeries that may require intubation are very scary in a kid who used to have a trach.  Very often, there is scarring and narrowing of the child's airway already and sometimes the child's airway has been surgically reconstructed.  This all leads to the risk of the intubation not going well and the child needing to be re-trached.  It is for this reason that parents are advised to have all surgeries that they know their child will need taken care of before decannulation.  

Therefore, in my uneducated opinion, Marissa needs to have the surgery to open up her nasal passage before she is decannulated.  I addressed this issue with the new doc yesterday and, once again, he wanted to defer that decision to Dr. P.  Very understandable because he does not know Marissa like Dr. P does, but frustrating on my part. 

All of this to say that, while Jeremy and I have been hoping for the last year that Marissa would get the trach out in the next six months, we have been preparing ourselves for the possible reality that it won't happen for at least 14 to 18 months instead.  All hope is not lost that a miracle could occur in the next six months that would lead to decannulation, but yesterday's visit just brought the longer timeline into much sharper focus for us.  We can definitely handle another year with the trach, but we are still disappointed.

I will end this very long post by letting you all know that I just scheduled Marissa's T & A for April 13th.  It is normally an outpatient procedure, but because of Marissa's complex medical situation, the doctor wants her observed overnight in the hospital.

Oh goody, another surgery to start fretting about!  ;)


Hope said...

Whew......That's a lot to think about. A lot needs to happen before she gets her trach out, 2 surgeries and recovery, right? Then 1 month or so of capping. I don't see how this can't be done. Let's hope that by the time of her post-op appt, Dr P will be back. If she isn't back by then, I'd make weekly calls to her office until she is. Make an appt as soon as she's back to check Marissa's jaw and get her in to get her nose fixed. I'm hopeful that this can happen this Summer or very early Fall.

Marissa will do GREAT with her T&A. Maybe you can use that recovery to see if she'd like ice cream or popcycles? (Or if not, then use it for snuggle time!)

Hugs and prayers to you guys!

Nana and PaPa said...

Oh the challenges of a medically challenged child! I know how disappointing it is to think Marissa may not be decannulated for a longer time than originally thought, but keep your hopes up that MAYBE....just POSSIBLY....Dr. P will be back soon and these situations of Marissa's will be resolved and scheduled for repair, etc....as SOON as possible...knowing you may be waiting anyway for the longer time. This too can be overcome. She's a stong spirit and has met each challenge with stamina and determinatiion...just as her Mommy and Daddy have. Hang in there....we love you.
Nana & PaPa

The VW's said...

"Patience is a virtue.".....It may be a virtue, but it sure isn't easy!!!!!

I'm so sorry that the time frame might be longer than you had hoped for! I will be praying that things will progress faster and, if not, that you will find peace and PATIENCE to accept the situation.

When Gavin was in the hospital this last time a doctor said to me, "Wouldn't it be nice to have a crystal ball to look into to know what the future holds for us?" He said this because I was saying that it looked like Gavin would be spending a long time at the hospital at the rate he was going at getting off the oxygen. Anyway, although it looked like the future was looking bad at the time, the next day Gavin made a huge turnaround and we were able to come home sooner than we anticipated. I pray that yours and Marissa's future holds the same, that everything goes smoother and faster than it looks like it is going to!

We may not be able to see into that crystal ball, but we do know WHO holds our future.....keep your chin up sweet friend! I'll be praying!

Janay said...

So sorry to hear about a frustrating appointment, seeing a new doctor is always hard. I'm working tomorrow and will check into anesthesia for Marissa again, I'll see if the same Dr. as last time will be working. Maybe I can get the scoop on Dr. P too :0)

Hang in there!

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...

Overload of decisions.....I hate leaving doctor appointments feeling like that.
thinking of you.

John and Jenna Gensic said...

Good luck with the T&A. Cramming in all the extra surgeries is frustrating, but I completely understand your organizational attempts. We are going through nearly the exact same scenario with Mikan. We are praying for Marissa and her ENT.


Michelle said...

Wow. A lot to think about here. But no matter what happens, it's in God's hands now. I will be praying for Dr. P to come back, for the surgeries to go well and that Marissa will start the process soon.

Love you,
Auntie Chelle

Momof5 said...

We will keep praying for you and Jeremy and Little Riss. I know it's so hard to watch your children go through these things. You are a wonderful, strong mom! God's got this one babe. Let him take it. We love you!

Dana said...

There is still the hope of it one day. Just give it to God. HOpe this new surgery goes well.

Kendra said...

Sorry about the discouraging visit! Sigh. Don't give up hope and trust God knows what timing Marissa needs. T&A--yuck! Will be thinking of and praying for you!