I do not think any parent wants to have to make the choice to trach or not to trach our children, but unfortunately many of us have been placed in that situation.
We have chosen one or the other based on nature of the disease our children have. When Mighty Z was born the doctors had no way of telling how bad Mighty Z's disease really was, because they had never seen it before.
Many years later when the doctors were able to test for the disease we realized that Mighty Z mutation wasn't really that high she was a 26 repeat.
We trached Mighty Z when she was 4 months old based on the information we had at the time. Now children with CCHS who is a 26 repeat might not need to be trached.Would have I trached Mighty Z if I had the option 11years ago? No!! I think think that I would have tried BI PAP 11 years ago.
However looking back on the past 11 years, I do see that it really was in Mighty Z's best interest that she was trached as a baby. CCHS is a very hard, unpredictable disease, and combined with an infant for our family at least it really was the best choice.
When Mighty Z was 3 we placed in her chest breathing pacers.It consists of surgically implanted receivers and electrodes mated to an external transmitter by antennas worn over the implanted receivers.
By the time Mighty Z was 4 we were able to get her trach out.
Is this the best plan? Did we somehow get it right? No I don't think that at all. What I think is that Our footsteps were ordered by God for what was best for Mighty Z and our family.
Not one road is the best one to take..
I think we need have mutual respect and empathy for all the who walk in our shoes, for all the different footsteps that God is ordering for what is best for each family and their Mighty A's-Z's
Thanks Melinda for letting me use your picture01