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.