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
When we were in Tulsa, we were trying desperately to return home, and having a hard time getting insurance to pay for a life flight. When we finally got the cost of ground transport approved (an impossible option, but a $7000 savings on the $11,000 flight cost), we asked what the doctors in Tulsa would have done had we stayed. They said they would have trached her and put in a feeding tube that week. When we got to Nashville, they starting working immediately to extubate her, and she's not been intubated or trached since. A few months later, I got an insurance statement that showed that the full $11,000 was paid for her life flight by insurance. I felt like that was God's way of confirming that He was supporting our decisions and we were on the right path, not alone in the very hard decisions we were making. And Hannah has done so great on the BiPAP. I remind myself all the time of how things have gone thus far when we look at our options.
ReplyDeleteI think you have to make the best decision that fits your family member, the information you have at the time, and your heart. It's never an easy decision. Sounds like you did the best that you could have, given the circumstances. It's hard to regret that!
ReplyDeleteOur dream is to see Tiago free of trach, but trach gave us conditions to bring him home (he's 27).
ReplyDeleteNever give up!! there are always options.. finding what is right for Tiago and for your family is what is important. if it is BiPap or pacers whatever fits jus dont give up that dream
DeleteI love the picture :). The idea of a trach was very easy for us. We wanted him home so badly and we knew this was the best option. Besides, I was so tired of seeing all of the tape and tubes on his face. When I saw him sleeping after his trach surgery I knew we had made the right choice for us. The way we see it, he doesn't need a trach, he just needs the ventilator. CCHS is such a complicated disease and every child, even with the same mutations, are different. The most important thing for all of our kids is that they are ventilated adequately, regardless of the method. I am so thankful for my CCHS family who can provide all kinds of information and support through their different experiences.
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