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.