Tuesday, October 2, 2012

Cindy's Daughter with CF

Sometimes, at night, I unhook Bradley from all of his tubes and pull him into bed with me.
The other night we fell asleep cuddling this way.
And at about 4am I was awakened by a blood curdling scream.
My heart skipped a beat as I jumped to me feet and turned on the lamp.
Bradley was shrieking at the top of his lungs.
Half asleep still, he had giant tears on his cheeks.
I held him and told him Mommy was here.
He calmed and quietly cooed and regained his normal composure.
I realized he must have had a nightmare.
About what, I don't know.
But I'm sure there are nightmares in some of his memories.
Times when tubes and wires came from all parts of his body.
And needles were pushed into his spine to obtain fluids for testing.
I'm sure he has nightmares.
And he was awake for a bit and acted like he wanted to know I was there with him for sure.
He kept rolling towards me, almost pushing me off the bed.
 And I and thought about the scary nights he spent at the hospital.
I know he was tiny, but I'm sure he remembers it.
And I thought about my sister who had meningitis and a spinal tap at three months
and how she used to cry in the middle of the night too.
Yesterday we saw the pulmonologist.
He is still hearing a rattling in Bradley's right lung, which is consistent with aspiration.
We just finished a round of clindamycin. He told us to keep up the albuterol and the budesonide.
He told me to continue chest PT in hopes of loosening the junk in his lungs.
I showed him what I was doing and he said I wasn't doing it hard enough.
He said he'd send in the nurse who was also an RT
and she would show me the correct percussive frequency.
When we were done, Cynthia came in and she showed me how to tap Bradley.
And she gave me a few tips.
And we started talking about her daughter who
had cystic fibrosis and who she had cared for for 38 years. 
 The first time I had met Cynthia, she was putting Bradley on oxygen
and loading him in my car for his first stay at the hospital with RSV.
And as she was walking us to the car, last October,
she told me her daughter had passed after a lung transplant.
And yesterday she went deeper into the story about her daughter.
She told me that her daughter was very tiny at
18 months and nobody knew what was wrong with her.
And she was a nurse by profession and she pulled out her medical books
and mulled over the pages searching out her symptoms.
After a lot of research, she took her daughter to the doctor
and told the doctor she thought her daughter had cystic fibrosis.
The doctor said it wasn't possible and ran a test and sure enough, she did.
She had diagnosised her daughter.
And they started treatments on her and she thrived for someone with CF.
She even became an overachiever. Cheerleader. Class President. Validictorian.
And when she was in high school
 she would wake every morning at 5am to start her treatments so she could breath.
But before she died, she was intubated for her comfort.
She had undergone a lung transplant and her body rejected the donor lungs.
And to help her breath, they put in a breathing tube.
And Cindy said she called her the last week she was alive,
because H1N1 was in the hospitals and she had a cold and the nurses said she couldn't come in.
But she called her daughter and the nurses held the phone to her ear and Cindy talked to her.
And Cindy said her daughter could not speak because of the tube in her throat,
but she was comforted knowing her mother was there.
And I started crying and told Cindy she should write a book.
And she said her daughter already had.
And that she had the money to publish it now and she needed to.
And I walked out of the appointment pushing my baby,
thinking about Cindy's and everything that they went through together.
And everything Bradley and I have gone through and how much more is to come.
I could write a book too.
I am.
There is so much hope when you create a life. When you have a baby.
 And when you are told they have a disease or a disability, it can be devastating.
But as time has gone on, I have realized living with a disease can also be inspiring.
It can remind others that there is a God in Heaven.
Remind all of us that life is precious.
And show others that the human spirit is VERY strong!

I am grateful for my disabled and diseased son.
He is my hero.
He is my heart.