I just have to get this off my chest. Yesterday I emailed her surgeon in Boston to let her know that we were unable to get the sleep study done this winter. Harlie was way too sick from Christmas to April to make it happen. And now, it's been five months since she's worn her cap during the day. We have started to try to get her to wear it again, but it is a struggle. I'm hoping she just needs to get used to it again, and that she's just forgotten how great it is to have a voice. We've bribed her a few times with the iPad and computer and she's worn it for about 10 minutes, twice. Not much to brag about, that's for sure.
Anyway, her surgeon is fine with proceeding with the jaw distraction without it. As am I. But, in the surgeon's response to my email, she said that she needs to see Harlie in the next month. She needs a CT scan so she can do the treatment planning and device fabrication. She also said that it's important that I am aware that the jaw distraction might not be enough to get her decannulated (removal of the trach).
I knew that. I know that. I know there are no guarantees. Ever. But something about reading it, seeing it, whatever, has made me sad. It's gotten me down. It's not new information. So I don't really understand why it's gotten me like this. I guess I just live moment to moment, day to day. I don't really look too far into the future. And I have to hope that it works. Because to think about it not working is devastating. And I can't live my life feeling devastated.
Thinking about it also brings up questions in my mind. Questions I've had for a long time. Will we ever get her decannulated? Will I ever hear her true voice? How many surgeries should we do before we give up? I believe that these surgeries are necessary, even without decannulation as a goal. She still needs better oral structure for better speaking and eating, even if she has to live with the trach.... for however long she has to live with it.
So, thankfully, these surgeries aren't for nothing. But still... I want to know what life is like without the trach. I want her to know what life is like without the trach.
I'll bounce back. I do have hope. And I have to hold on to that. And get us through the next several months of a tough time. We can do this.
Thanks!
Christy xo
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4 comments:
I don't have words to take away the devastation or even to instill hope, but I wanted you to know I am listening and hearing your frustration.... as are many other's who rarely comment.
You are already processing your potential disappointment. It is probably really healthy that you are allowing yourself to grieve that possibility before the surgery. That way you'll go into it with the right hopes and the right expectations. And there IS still hope and lots of it. You can do this. You did it last jaw surgery, you can do it again. Hang in there, friend. You and your girl are such fighters!!! Prayers!!
(((HUGS))) I'll call you next week. You are right that she needs this surgery to give her better jaw function for eating AND speech. And remember even if it's not enough to decann her it likely will be enough to open her airway some so that she can more easily wear a valve or even a cap. Then she will have a voice and can work on language skills. That's not such a bad worst case, and really it very well might be enough so don't give up hope yet.
Oh Christy, I'm sorry to hear it. You know I know how hard it is to put our kids through this (and I appreciate your support as Faith is going through her distraction now) and I can totally understand the disappointment to hear her say that. It just seems like it took the hope away. But hang in there. Get the CT scan of the new bone in her jaw (can't you do that locally and send it to her? Why do you have to go there?) and maybe she will say something different if the bone has grown well since her graft.
Hugs!
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