Wednesday, December 10, 2008

I've been sleeping like a rock. Zar stays at the hospital with Boo, and I, a nursing mother, get to go home and lay in my huge, quiet, empty bed and sleep all night long, or from 11 to 6:30, when Ella gets up and we go back to the hospital. There is no snoring from Zar or Boo. (The night nurses enjoy that from the comfort of their station, right outside our room.) There is no clicking feeding pump, humming humidifier, or alarming monitor. No toddler nightmares and resulting shrieks. There is simply dark, heavenly, peace.

This is the reason I can handle the days here, trying to push my opinion on the doctors without being insulting, watching my little girl being held down, screaming, for various tests.
We were supposed to go home yesterday, told to keep Charlotte on her oxygen monitor whenever possible, told it was probably a "brain blip" and there was nothing to be done.
"what about reflux induced apnea?"
"It's not reflux." says Dr. Cline, "She has a nissen and is on prevacid."
"But what if?"
"Well call Meyers then."
So I do, and Meyers wants one more test before we go home.

Major, immediate, life threatening REFLUX.

Charlotte needs surgery. Last time she had surgery, March, 2007, she barely pulled through.
So here we are. Do we do the surgery, which she may not survive, or do we do nothing, knowing any moment she could turn blue and die, any moment she could come down with aspiration pneumonia, and even if she doesn't, the reflux is eroding her insides and making her heart condition worse?
I am thinking surgery.
During the night Charlotte spikes a fever and requires a couple sheet changes.
No surgery any time soon! No going home either, except for those short, sweet, heavenly nights.

PS. In case you are wondering...
Charlotte had a surgery to tighten the top of her stomach--a Nissen Procedure. It is supposed to hold the stomach closed when it is full, like a drawstring bag. It has loosened so that she is again refluxing acid and stomach contents into her esophagus. Charlotte is good at "protecting her airway" so when this happens, her throat spasms closed, which keeps the reflux from entering her lungs and giving her pneumonia. However, with her throat closed, she cannot breath. When she tries to push air out of her lungs she "vagals out" meaning she puts pressure on her vagus nerve and passes out. This occurred on the school bus on November 20th, in the car on the 5th, and again Sunday morning the 7th, when we finally decided to come to the hospital and ask to be admitted. She now requires a repeat Nissen to tighten the wrap on her stomach. However she also had contracted C. diff which will probably postpone any surgery for weeks, and keep us in the hospital as well.


Amanda said...

Love you Boof! Get better so we can come visit! We miss you!

Shannon said...

Way to go Erin- I'm glad that you listened to your gut and pushed for that test. It really sucks that there aren't a lot of good options right now- but at least you know what it is you are up against. I love you Erin - you are such a great mom. Call me when you get a craving!