On Monday I took A to her ENT (ear, nose and throat specialist). He is the one who is charge of the decision whether or not--and when--to take out her tracheostomy. Each summer, for the past two years, A has gone into the operating room where they have put her under anesthesia and our ENT has "scoped" her, meaning that he looks down her throat to see if she is ready to take the trach out (otherwise known as decannulation). And each time, he comes to the consultation room after the scope and tells J and I that she is not yet ready. I get my hopes up every year, thinking THIS is the summer she will be decannulated, only to have them dashed.
Anyhow, in talking to him on Monday, I get the sinking feeling---AGAIN--that this year is not to be the year. A has some complications in her airway, including a paralyzed vocal chord and a swollen part of her larynx. Of course, he doesn't know anything right now; he needs to scope her to actually see what her airway looks like. And for the first time, he said that after the scope we might have options that we can discuss together. I'm not sure what those options are, but just hearing that there are options to discuss is new to us.
I realize how great A is doing, and feel enormously grateful. She has come so far in the almost four years she's been here...and accomplished more than I ever really thought she could. Also, I had a checklist of four goals I wanted for A this year. She is so far accomplishing 3 out of 4:
1) Walk. DONE! She has been walking full time since January, and even completed her first race!
2) Talk. DONE! She has a long way to go in terms of expressive language, receptive language, and articulation, but she talks all the time now, often in 4-5 word sentences, and is using language nuances such as gerunds and prepositions.
3) Eat and drink, enough so to get her g-tube removed. DONE! She has not used her g-tube (feeding tube) since last July, which is 9 months ago. We have already returned all the feeding tube supplies back to Children's Hospital Home Health. She is getting her g-tube removed this summer while sheis under anesthesia from the ENT scope. It will be gone.
4) Get her trach out.
Ah. That. The one thing we have literally no control over. No amount of therapies can help her airway get bigger, or unparalyze her vocal chord. There is nothing we can do for her except wait and see.
Even if she doesn't get the trach out, she will have met 3 out of 4 of my goals for her this year...75%! Even meeting one of those goals would have been miraculous, but three?
And yet....and yet I really want the trach out. Don't get me wrong...it saved my daughter's life, and I have no doubt that she would be dead, or at the very least doing extremely poorly, had we not consented to it. But I'm tired of it. I am sick of lugging her suction machine around everywhere we go. I desperately want A to be able to go in a swimming pool, or the ocean, or even a half-filled bathtub. I would love to be able to leave her with someone other than my husband, our respite nurse, or my best friend, the only 3 people besides me who are trained to care for her trach. It would be heavenly to be able to drop her off at a friend's house for a playdate, or drop her off at school without me or the nurse having to remain on the premises at all times. I would love to be able to have more date nights out with my husband, in which I could hire a babysitter, rather than have to ask either our nurse or my best friend.
I have to make peace with the fact that the trach may be in another year. Or more. I would love it to be out by the time she starts kindergarten, which is 3 years from now, but in reality, I want it out this summer. And it just might come out. But just as easily it might not.
We will wait and see........again.
Week 38: I Am Still Pregnant. And Tired.
4 hours ago