My take on how to raise a chronic, fragile, medically
complex child is simple go as far as you can see; when you get there, you’ll be
able to see further.
When I was first entrusted with Mighty Z’s mighty
little life I was completely overwhelmed, I could only see as far as the next
minute, however soon the next minutes turned into hours, then days, weeks,
months, and years.
I slowly began to open my eyes to my new
surroundings of life as a special needs mother. I noticed others who were
walking this road, some were not as severe as Mighty Z, and some were much more
severe.
I began to see that if I opened my hand to others
who walked this path, I would began to see further.
Sometimes it isn’t just about you and the stress of
raising a child on life support machines it is about all of the special little miracles, and because of
that I decided to take Mighty Z off the new medication that is making her
breathe to make sure it was the medication that was doing it.
Why in the world would I do that? Many reasons
really.
First, because even though I know and Mighty Z’s
doctors know that this medication is making her breathe not everyone is going
to believe it.
I still have people ask if Mighty Z will outgrow
CCHS (Congenital Central Hypoventilation Syndrome) the answer is no. Mighty Z
has a repeat of the PHOX2B gene, and because of the effects the mutations has
on neuro-development. Simply put, Mighty Z's ANS neurons aren't where they are
supposed to be, and this loss of communication causes many of the symptoms of
the disease.
Still Mighty Z is breathing more than she ever has
It is important for me to make sure other CCHS
patients and even those with various types of central apnea (FYI CCHS is not
apnea) are able to prove to their doctors that this medication does work.
Even my doctors say that if another CCHS patient
told their doctor about Mighty Z and this medication the first thing the doctor
will say is 1) maybe Mighty Z doesn’t have CCHS and that’s why they think it is
working. 2) Mighty Z’s PHOX2B mutation is different than your child’s mutation.
Or 3) how do we know it’s the medication.
So today I have stopped the medication (per her
doctor’s instructions) that makes Mighty Z breathe. Her doctors said not to put
her back on it until she starts acting like the old Mighty Z who has CCHS.
Part of me does NOT want to do this. I love the fact
her breath rate on her machines has gone down from 26 to 14 because she is
breathing on her own. I adore the fact that for four months since she has been
on this medication she has not needed oxygen, and which sickness does not throw
our family into a panic. I enjoy that there hasn’t been any crazy CCHS
randomness.
The other part of me knows that if we do NOT do this
then the only one who benefits is Mighty Z. Although that is wonderful there
are so many of Mighty Z’s CCHS brothers and sisters that deserve the chance
to….. Well breathe.
