Eight years ago, almost to the day, Madelynn was being
transferred to a step-down room in the Cardio Vascular Intensive Care Unit (CVICU).
Her heart surgeon happened to be walking down the hall during the transfer when
suddenly they realized she was in trouble. The next thing I knew she was
reintubated, very, very sick and they were talking collapsed lung and paralysis
in her diaphragm. Just a little too much for this momma to take since open
heart surgery was less than a week prior.
But she fought, every single day she fought harder than the day
before.
As part of her release from the hospital, she was under the care
of a pediatric pulmonologist. Seeing this specialist had a very rocky start.
Thanks to Madelynn’s primary care doctor, we found an excellent choice. Of
course, it wasn’t a choice he was the only one for a few hundred miles.
However, God always has a plan and it was a good one. The worst part was he was
a few counties away and a long haul. The appointments are never quick because
she must complete breathing tests to see how her lungs and diaphragm are functioning.
Sometimes we would get there and Madelynn was in distress and breathing
treatments were required.
Every time that happened I felt as if I had failed her again.
How did I not see that? How did I not know my own child needed help? I would
usually cry all or part of the way home thinking I failed again. The two hour
round trip drive became a form of therapy for me. Madelynn would usually sleep
most of the way, Phil is at work so me, myself and my thoughts became the
entertainment.
Today’s appointment was no different. Madelynn had earbuds in
and I was driving us down HWY601 through three counties. I should admit I have
learned to love the drive. It is a 2-lane highway, large old barns, horses, cattle,
towns with only a post office and beautiful rolling hills. In the last eight
years, I have watched a factory go up, old barns come down and parts of the
country become parts of cities. Usually this appointment takes place in the
summer, this year it was pushed back to late fall. The fields weren’t smothered
in corn taller than my van but cleared and you could see the farms getting
ready for winter, rolled hay, the trees were bare and farm equipment put away.
Every time I go to this appointment I have big dreams. I am
always let down. My hope today, the doctor would clear her for good. Not quite.
During the testing Madelynn, must try and blow a constant stream of air without
taking a second breath. It is turned into a video game so it is very interesting
for the kids. Her player bounced across the screen so it was messy but she did
it. She is then moved to what I call the big box. It is slightly larger than a
telephone booth. She is hooked up to machine and must bowl a strike with her
breath. Ultimately, she must take a deep breath and then empty her lungs
without taking a second breath. She did not make a strike. The ball never made
it to the pins.
After a few more details the nurse needed to obtain, we met with
the doctor. He told me that reviewing the results he believes either her
diaphragm is completely healed or her mighty body, as tiny as it is, has
figured out how to compensate for what her diaphragm can’t do. All great news
right!!!?? Then he tells me he is not ready to release her yet. He does not
know what her body will do as it matures and ages. Will it be able to keep up
if she is compensating and not completely healed? So, we are released for the
next two years and will see him in 2018.
I refuse to be discouraged. This will be hanging around in the
back ground for the next two years. But we do not have any limitations. We can
still live life just as before. Let her do and try new things until her body
says no. We keep moving forward.
God knew I would put thousands of miles on my car making the drive.
He knew the reflection time was necessary. He knew he had to take all the other
doctors away so we would travel to this one. He knew I would love admiring his
magnificent creations. I will always travel the long haul down 601 because I
believe. I believe He has big plans for Madelynn and I will never close an open
door.
TTFN~
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