Friday, March 27, 2009

A Flurry of emotions...

When the surgery scheduler called to confirm Faith's bronch and kindly reminded us to be there at 5:30am, we thought the Reming sleep curse was in full effect, and it was just our luck that on our day off we would need to set our alarm clocks for before dawn. And then when we found out that the biggest storm of the year was sweeping into town, and would be a full on blizzard by noon, we knew that God still loved us.

I am not sure how I feel about the yesterday's bronch. We got some information I was not ready for, and all of my preconceived notions were thrown out the window.

I will start at the beginning, for the 80% of the non-medical people who read this (the other 20% just skip to the next paragraph.) Yesterday, Faith had a rigid bronchoscopy. In layman's terms, this meant they took her to the operating room, knocked her out with anaesthesia, and metal tube with a camera down her airway to check things out. Faith routinely receives flexible bronchs in the doctor's office, where they insert a soft, flexible camera down her airway. As you can infer, the rigid bronch offers a much more complex look at her airway. She has not had one of these for over a year.

We have not had much information on Faith's airway other than the comforting words, "it's complicated." Yesterday we learned that there is permanent damage caused by her many months spent intubated. It is still very swollen and yes, "complicated." In the past we were told that time and growth would reverse this. Faith's ENT noted how incredibly small her airway is (they could barely fit a size 3 ET tube down) and there is no way a child her size could breathe through it.

Yesterday, we were told that time is no longer significant, and the only way to fix her airway is by way of reconstructive surgery. We knew this was coming and is par for the course in the trach world. What we weren't prepared for was what came next. Faith would receive reconstructive surgery to repair her damaged airway, and they would take the trach out at the same time.

Ok, before you all freak out on me, need I remind you our child is still on a ventilator during sleeping hours (and when she is sick) so of course this would have have to come after she is stable off the vent.

It was shocking not only to hear that there is a possibility of the trach coming out, but the way it would be done. Everything I know went out the window. I know quite a few kiddos with trachs and the typical process for getting a trach out goes like this; child exhibits airway is stable by making noise and is usually giving a speaking valve which restricts some airflow through trach, having a leak (meaning air can pass through mouth/nose), moving down a trach size, and "capping," meaning a cap is placed over the trach so the child can practice breathing through their nose/mouth. Faith meets none of the above criteria. And she never will. Her airway is far to damaged to ever be able to breathe without reconstructive surgery. This means there will be no "practice" round. Decannulation is extremely scary, I cannot imagine doing it like this.

No need to get wrapped in it right now, because Faith is still ventilator dependent (for the most part). We've been talking about vent weaning for some time, and being ventless may help her sleep better.

After Faith is weaned she will need her tonsils and adenoids out, which once again is a given (the more space back there the better) so we have some hoops to jump through before any of the above is an option.

Thankfully, life with Faith has been status quo for some time. We've settled into this "special life" and however stressful it might be, have become quite comfortable in the world of raising a medically fragile child. Progress is good. Progress is the goal. But it also brings a flood- no, a blizzard of emotions. Like the wet and heavy spring snow that began to accumulate outside, I felt suffocated by this flurry of new information.

As Faith came out of recovery, we received word that highways were being shut down and schools were closing. In my five years of teaching I can count on one hand the number of times schools have been closed due to snow (with fingers to spare, it's been 3). And our district is on spring break. Go figure. Nevertheless, we made it home in one piece, and spent the rest of the day recovering from the emotional week in our cozy home.

Today the storm has passed. The sun is peeking through the clouds and has begun to melt away the placid drifts of snow. And somewhere beneath it all, the vegetation that has been dormant for some time, is ready to spring.



Marissa said...

Wow, a single stage LTP? Interesting. :)

I totally understand how you feel with the "blizzard of emotions" about progress and decan. It looks like Faith will go about decan differently than Marissa, but I understand being so immersed in the status quo that a change that drastic, while good, brings on its own anxiety.

When Marissa first got her trach, my only thought was "how soon can we get rid of the trach?" Now that it has been almost two years, decan looks good, but scary at the same time. Safe, stable airway and all that. And for you to know there will be no "trial", no practice, that's scary too!

Hugs to you my friend, have a great weekend!


Hope said...

I know it's a huge change, but try not to worry about the lack of a trial. I'm sure they will make very, very sure she's able to be trach free before sending her home.

Did they come up with an actual plan for weaning her from the vent?

I'm thinking of you guys! To be honest, I'm thrilled that they are doing the surgery.


Anonymous said...

My goodness..I have nto been getting my emails so I apologize for being such a slacker. Please KNOW you are always on my mind nad in my thoughts..I am so sorry sorry for not writing!
s I complain of trying to get things in order while your uncle is deployed and working etc etc I get remined of things when I read your posts. A freind also sent me this:
"I am only one; but still I am one. I cannot do everything, but still I can do something; I will not refuse to do the something I can do." .
THIS is what gets me through!

I love the pics of you while doing your sleep test..Holy crazy! I am sure that was an experience!

I am a little confused on the last blog..DID you do the reconstructive sugery or are you goign to.?
I have been watching your what a mess! Please tell mommy and daddy be careful driving ok!

Well sugar KNOW I love you and think of you ALL the time. I am so sorry I have NOT been a good Aunt..Ill try better!


I LOVE IT send more!! =)

Miss you baby girl
Aunt Susan and gang

Anonymous said...

Jen, Brian and Faith: I miss you guys.

Michelle said...

Ditto to Alicia's comment. I understand where you're coming from. There never seems to be a "peace" does there?

Anonymous said...

We are individuals and our needs medically are different than one another. Her particular airway seems to be telling you it can only be done this way. I bet when it is time, you both will be ready. Until then, it is time for something else today. Glad you had to day to coocoon together. We keep you in our prayers. --Aunt Libby