I swear we don’t live at Phoenix Children’s Hospital, but it
seems that whenever I find time to post an update….we are at PCH. I will get to all that but first allow me to
backtrack so this record has some sort of order.
I believe the last time I posted an update we were
re-admitted to the CVICU at PCH because Alessandra had a chylothorax effusion
(I have been saying ‘infusion’ instead of ‘effusion’ for the past month, I only
recently realized that was incorrect. I
hope nobody noticed.) The EFFUSION was
caused by her heart surgery and fluid was accumulating in her chest cavity due
to some cut or disturbance to her lymphatic system. Several steps were taken to remedy this: 1)
Diet change from breast milk to a gross non-fat formula... Didn’t work. 2) Aggressive diuretics to flush
the fluid out of her system.... Didn’t
appear to work. 3) 8 days NPO (without
food) so that she can heal without stimulating the thoracic ducts while processing
fat intake.... Didn’t work. 4) A procedure called Pluraldeses (sp?) to expedite
the healing process by swelling the chest cavity with a chemical inserted by
chest tube. ... Sorta worked.
The pluraldeses (sp??) procedure was done a few days before
Christmas and we expected good results.
A few days after the procedure Ali’s x-rays looked great and Dr. Nigro
(Ali’s surgeon) surprised us by releasing us on Christmas Eve. That was the most amazing gift ever! We were
no longer hostages and were free to spend time as a complete family. For so long Mark and I had to trade shifts. We
would only see each other for a quick switch-off and poor Bailey really missed
her sister (RSV restrictions at the hospital will not allow kids under 12 to
visit). The holidays were so wonderful
and Ali’s development was rapidly catching up.
She was interacting more, sitting upright on her own, rolling from tummy
to back. Her being home makes such a
difference. The past month of my life
has been so special. It really brought
us back to the basics and it’s a lesson I want to carry with me. Sitting around the dinner table each night
with the fam is the best thing in the world. Even if the baby is crying and
throwing her food. Even if the pre-tween
is complaining about how gross squash is.
Even if I know there is a million things I have to do once dinner is
over…It’s a few moments out of the day when I feel restored and we are all
where we are supposed to be.
As outpatients we were not out of the clear. Alessandra had
weekly x-rays and doctor appointments to monitor the fluid. Unfortunately, the fluid came back. At first we were watching it and treating it
with diuretics, but no real progress was made.
She seemed fine so the plan was to wait it out and continue with the
diuretics. Well, for the past week her
breathing was becoming more rapid and she was doing more chest-breathing
instead of tummy-breathing. Her
cardiologist was keeping close tabs on her and her breathing pace was to be
expected considering the fluid in her chest.
Yesterday morning we noticed she was slightly grunting with each breath,
which didn’t seem right. It’s hard to
tell if she was coming down with a respiratory sickness (ugh, I can SEE the
germs crawling everywhere this season), or if the fluid was giving her trouble. We called the doctor and it was recommended
that we admit Alessandra back to the CVICU for observation.
Coming back to the hospital is very familiar. We know and love all the staff and doctors in
this unit. They are all polite and
accommodating. The doctors and nurses go
out of their way to answer any and all questions. Ali is in good hands. She’s a rockstar when she’s here. She has people standing on their ear to make
her smile. She won’t give it up too
easily, although I know she is secretly amused.
For her, the poker face is important.
She’s learned that someone can be her friend one second and then poke
her with a needle in the next second.
She is very keen on the subject of human behavior. In fact, last weekend we took her to the zoo
for the first time and when I approached an exhibit with her on my hip she had
no interest in looking at the animals, but wanted to look at the people looking
at the animals. I think she will grow up
to be a lady of science.
Anyway, so we are back at the hospital waiting for the next
step. It is likely she will get cathed
tomorrow morning to verify that the fluid is chyle and not due to a blockage in
her cardiovascular system. I’m a little
nervous for this because her last cath brought out the Hulk. I think we know what medications work, and
she is much more stable since her surgery so that incident shouldn’t repeat
itself. What I’m REALLY hoping for is
that the IV Lasix did the trick and we will get an x-ray in the a.m. that will
say all of the fluid was miraculously lifted and we can go home without any
invasive procedures! I know it’s a long
shot but I have to always hope for the best.
On a closing note, CHD awareness week is Feb 7th
through the 14th and I plan on celebrating the heck out of it. I hope that you will join me. CHD is such a struggle but treatment methods
and surgical practices have come such a long way. It was only a few decades ago when babies
like Ali wouldn’t have had any chance at all.
Practices that began with baboon heart transplants for single ventricle
babies have evolved into some very efficient surgical plumbing. I’m so grateful for the research that has
been done and there can always be more.
Spread awareness!!!
~Melissa
