The Higher We Rise, The Farther We Fall
Today I thought was going to be a good day. Today I had hope. Today, I thought I would walk into Kilians room and see him in a crib, without his PICC line, without his ventilator. Today I started thinking he would be home sooner than later.
Today, I feel like my heart has been ripped out, and I'm so close to just being done.
I'm trying to hold back tears. I don't want to break down here at the hospital. But I'm leaning off the ledge, and I'm so ready to jump.
Im angry. Angry at myself for believing things were better. Angry at everyone who led me to believe so. Angry that I didn't push to put an end to this while I had the chance. Angry that I even have that thought. And so bitter that I can physically taste it in my mouth.
I want to scream. To break something. To find a dark corner to sob in and never come out. I want to stop telling myself to 'be strong', 'have faith', because it all seems pointless.
Today, is a bad day.
Kilans bronc was done, and I foolishly expected the results to come back normal. I expected for him to be off the vent, transitioned to a crib, and I was hoping today would be the day I would hold him.
Today is the day that we discussed possibly nearing end of life care, switching from trying to make him better to trying to make him comfortable.
And my new fear is that the first time I hold him, will be my last.
Today we found out that Kilian is faced with yet another obstacle, one that has high morbity outcomes with his anatomy, as high as 65% in some cases. Today I learned about Tracheal Stenosis, Complete Tracheal Rings, and an operation called Slide Tracheoplasty.
Your airway is a long tube that runs down and splits, one side going to your left lung, and one going to your right. It is comprised of rings, of which half is cartilage and the other muscle..2 C's together forming an O. I learned today that Kilian has O shaped cartilage - Complete Tracheal Rings, narrowing his airway. And not just some rings, the whole way down..top to bottom.
They would like to possibly see if he will do ok off the vent regardless, but eventually they believe he will have trouble breathing (especially having one lung) or not be able to do so on his own at all, and surgery will be the only option - if it is an option. The cardiothoracic surgeon will be notified. He may be able to go off the imaging from the bronc, he may request another CT scan, and from that point we will face our first surgical consultation. Where we will talk survival rates, risks, and if the surgery is even possible. From the little research I was able to bring myself to do, his prematurity, pulmonary agenesis, pulmonary hypertension and anatomy are all going to make this much more difficult - if not impossible. Today we looked at Cincinnati as a last resort if this surgeon doesn't feel confident in preforming the surgery. Today I feel as tho we've been tossed back to square one.
He has come so far. He is doing so incredibly well. Why is this happening? Is he not meant to be here? Was he never truly meant to be ours? Kevin and I both want him to have the surgery, if not it seems he will be taken from us while in our arms - and he has consistently shown us he's not willing to give up. So how can we deny him the chance to once again prove everyone wrong. If he dies as a result, at least we will know everything was done that could have been..but what if the outcome is worse than death? What if his quality of life is exactly what we've feared from the beginning...and how do you live with that?
I don't want to talk. I don't want to think. I don't want to exist. When you're this broken, where do you even begin to pick up the pieces..and where do you find the will to do so? A higher power? Your other child? It feels like it doesn't even matter.
All we can do is wait - hope that the surgeon believes he can successfully perform the surgery, and that Kilian is strong enough to make it. How do you sit back when your child needs you the most and do absolutely nothing?
How do you accept that after rising so high, you've fallen so far.
Today, is a bad day.
"I saw you standing in the middle of the thunder and lightning
I know you're feeling like you just can't win, but you're trying
It's hard to keep on keepin' on, when you're being pushed around
Don't even know which way is up, you just keep spinning down, 'round, down
Every storm runs, runs out of rain
Just like every dark night turns into day
Every heartache will fade away
Just like every storm runs, runs out of rain"