Sunday, July 8, 2012

To love/hate the trach!

Carter helping Jax ride the merry-go-round.

You all know that Jax trach has been a love/hate relationship for me. Many people say, I love it because it saved my child's life. It did indeed save my child's life, but I still hate it. It has robbed me of my beautiful son's voice, and no, he has not, and will not, figure out how to talk over it. He just doesn't have the strength or comprehension. I've posted pics of me sleeping on the floor in Jax room, because I've had to suction him all night long. I can easily say that I have slept less since having the trach, than in my whole adult life combined!
The great things, no more worrying about a traumatic intubation. Jax lungs have improved greatly since having the trach put in. It is certainly peace of mind having an automatic airway in a fragile child! Our ENT that put the trach in said that it will probably be permanent. If, by some chance, it could come out, he would need a big airway surgery first.

So it was quite a surprise to me when our new ENT, who has only seen Jax in clinic once, suggested a path of getting that trach out after she scoped him. She also said he would need airway surgery, but she said she's seen tracheal malaysia much worse than what he has. She seemed excited after the scope, that we could get him decannulated soon.

Of course I have 30 seconds of bliss before reality crashes down. 30 seconds of yes, maybe we can actually go back to life before the trach. Maybe I will indeed hear my little boys voice again.

Yes, we can!

30 seconds up....

While I love her enthusiasm, its just not feasible. We did not trach Jax because of his tracheal malaysia. We actually didn't even know the extent of his airway, he had never had a bronch until the trach was put in. We trached Jax because of his lungs. Jax can not do c-pap. With that strong air flow, it pushes his tongue right in his airway, and he actually does worse on that than regular oxygen. Without the vent or c-pap, his pulmonary hypertension and lung disease will more than likely get worse again. Its obvious that he still has poor blood return to his heart, his face and neck are still puffy. I wont have an airway surgery, take the trach out, and then have to go through the trach surgery again. I just won't do it. ENT also fails to realize she is not the only one making this decision. Pulmo and cardio both gave a big thumbs down to the trach coming out.
I haven't talked to ENT since his surgery, our appointment is coming up soon. I really like her, and hope that she understands where we are all coming from. That the trach has to stay, at least for the time being.

This momma is going to have to continue to hear her son's voice in her memory, and hope that someday she will hear the real thing again!

(will you look at that teenager! He absolutely refuses to have a good pic taken!)


Shari said...


I can see your concerns with the trach issue with Jaxson. If I were in your shoes I would be scared to have it removed! You know what is best for your son so keep advocating for him. I know you will.

Also, your teen and my teen are so very different! LOL--my teen likes to have his pic taken and smiles every time! It's my middle son that will not shoot a good photo!

Take care,


The VW's said...

I wish it were possible to have the trach removed! Gotta do what's best for him! Hugs!

Alicia said...

I totally understand the love/hate thing with the trach. It just plain sucks to know that, even though it has saved and improved his life, it complicates things so immensely!

While it saddens me to know that Jax's trach is most likely permanent, I am proud of you for keeping a good perspective on things and not allowing one new doc to get your hopes up falsely. This also sucks, but I think you are dealing with it beautifully!

Becca said...

I'm glad you had the 30 seconds. But even more glad you know the real risks. (((hugs)))

Anonymous said...

jaxon will lead the way...he'll let you know if/when he's ready to be trach-less.

is jaxon a candidate for a passy-muir/speaking valve on his trach? one of my students just got one, and she's learned how to make sounds :) i hope you get to hear jax's sweet little voice soon!

DisneyRose said...

Do you have any video of Jax talking? I'm sure I speak for many when I say we'd love to see it and hear him!