May 13, 2009

2 Hours Capped! And then nothing.

Ainsley was doing well during speech therapy yesterday so I switched her from her PMV to the cap and she continued to do well. She was making even a bit more sound, which was exciting. So I kept it on until it was time to drive home and she made it 2 hours! Amazing. I think it helped that she was distracted by all the activity then I think she forgot she had it on. I had to remove it once for 30 seconds when she was working really hard in PT and seemed to be working a little hard to breath and once when she coughed but that was it, otherwise for a full 2 hours and she even had some coughing that she was able to recover from without taking the cap off. There has been a few long times like this but on average she is still in the 5-30 minutes range.

Then this evening when I came to relieve the nurse she was making a lot of noise using her PMV. So I tried the cap and she wanted it off right away. She looked alright but I didn't want to push the issue and I knew the second I walked away she'd remove it anyway. Dang that girl keeps me guessing. I don't know why it changes from day to day. But at this point I would just be thrilled if she could just continue to make more sound. I'm sure she will do well capping again another day. And I'm still thrilled at the 2 hours. But the progress will likely be inconsistent.

Every time I hear a bit more sound I hope "This is it. Finally her airway is turning around." but often the increase in sound is followed the next day with things being exactly the same. Every now and then I get to feeling down about the fact that I have a 2 1/2 year old that still can't make much more than a grunt of a sound. Part of it is likely neurological. But, I still think she will do better when the airway issues are resolved and that is why I am eager to get the trach out. Her care has become so much easier in the last 6 months since her fundoplication, and we've become so accustomed to this lifestyle that I know I can keep it up as long as I need to, but for her sake I want it out. So that we know that her airway isn't holding her back.

She has an ENT appointment in 4 weeks. Please hope and pray that somehow things have resolved enough that they can do surgery to remove some of the scar tissue to improve her voice and airway. I'm tired of being excited at the smallest sound and want more for her.

1 comment:

  1. Susan, I like your label of "hope" for this entry. Hope is a powerful thing! I hope and pray that the progress you are seeing with Ainsely's ability to tolerate the PMV and the cap means that you are just that much closer to the big D. I think it's fantastic that she was able to tolerate the cap for 2 hours. Keep up the good work Ainsley.