They have been been hardened by scar tissue, and the damage continues with every day that she is on the jet ventilator, but there is no way that she can get off this ventilator because if she were put on the other ventilator, at the levels that she is at now, there would be even more severe damage, and she would most likely not be able to tolerate it.
Since yesterday, her pressure level did go down, but only by 1. So, instead of being at a pressure of 35, she's at 34.
It's a step in the right direction, but unfortunately, it is too small of a step to make much of a difference.
She is doing very well in all other areas. Her blood gas tests are steady, and she is 'statting' well, which basically means that the machines are not beeping at much.
But she just can't stay at the pressure levels that she is at right now for much longer.
So, we are faced with decisions:
Do we wait out the course of inhaled steroids that she is on right now in hopes that her lungs will get better?
or do we start the systemic steroids in hopes that her lungs will heal faster?
But there is never a cut and dried answer to these things.
The thing is that she is beginning to fight the jet ventilator. She is sedated with morphine, but she is still beginning to fight it.
And that doesn't mean that she is pulling at the tubes...that would be an easy fix. What it means is that she is beginning to spasm and close off the pipes to her lungs. That means that no matter what we do, no O2 can get in there. As she grows, this will only get worse, which means that if she is still on the jet ventilator, she will have to be more and more sedated, which means more and more drugs.
But she can't get off this ventilator until she gets her pressures down...
which means that she really needs the steroids so that she can have a chance to heal.
But the steroids have a lot of scary side effects, both short term and long term. The biggest long term side effect we could be facing is brain damage and/or cerebral palsy.
So, you say, don't do it and just give her more time...
BUT...the longer she is on the jet ventilator, the more damage is done to her lungs, which are obviously what gets the O2 to her brain, which means that if her lungs are not working properly, then she's not getting enough O2 to her brain, which can mean...you got it. Brain damage and/or cerebral palsy.
So what do you do? Either one could work...
and either one could do long term, life altering damage.
do you sign the paper for the steroids?
Or do you wait it out...give it another week for the inhaled steroids to hopefully do the trick?
A week is a looooong time when you're the size of a ketchup bottle.
And then, it seems that she may have another infection, and if it is the same infection that she had before, then they want to treat her systemically with antibiotics, which can raise the risk of NEC, which is a life threatening disease of the intestines.
But they can't really give her systemic steroids until they are sure she has no infection.
So, all in all, it's a big circle...a catch 22...
and a tremendous heaviness on my heart.
I see her there and she's just so tiny and so perfect and there's just no way to know what the effects of what we are doing now to try to save her will have on the rest of her life.
A mother always wants what is best for her child, and a father will go to the ends of the earth to defend his daughter,
but what happens when all it is is a signature on a dotted line? What happens when you have nothing to go on? When all the cards are face down and you can't see what the future holds or what path to take, but you hold the pen that will decide to give or to not give potentially life altering drugs...
And what if the horrible 'what if' happens?
Do you collapse to the floor crushed with the knowledge that you stood there on that day and you signed that paper and you never knew that this would happen and you never wanted this to happen but it did...
all with the stroke of the pen that you held in your hand?
But you can weigh the pros and the cons and you can ask a million questions and you can learn a million facts that you never even knew that you would ever even want to know...
but in the end, it all boils down to a prayer and a step of faith.
Faith in the doctors, faith in yourself, that you do the best you can in every given moment because that's all you can do,
and faith in God. That this is all somehow in His plan...
from the very first breath that Hazel Grace took at 7:56PM on August 1 to the very last breath she will take, whenever that may be.
So, sleep on, sweet baby Hazel Grace. Breathe deep and stat well tonight.
We all love you, so have faith...