Apr 8, 2008

The Good and The Bad

I thought today would be easy, no big deal. We were going for a chest CT for the pulmonary department. Since she'd never really seen a pulmonologist I assumed she didn't need one. Ainsley's sats are always 98-100% and she's never had pneumonia or any trouble breathing (obviously there is the upper airway swelling, but once that was bypassed with the trach she never needed ventilator support or oxygen other than when she was sick with RSV.) so I assumed her lungs were fine. Her team of doctors in Seattle consulted with a pulmonologist but nothing of note was found. The CT today revealed that she seems to have bronchiectasis. Here's a link: http://en.wikipedia.org/wiki/Bronchiectasis I think we'll know more after the scopes tomorrow but it was a complete shock to me. The most likely cause is aspiration. It makes me concerned that it could have been caused by aspiration of foods from trying to feed her. My instincts told me after our September swallow study that I should not feed her but the doctors assured me that it appeared safe despite some contradictory information from the swallow study. (Too long a story to go into right now.) I stopped feeding therapy immediately and only resumed feeding after conducting my own dye tests at home and when I did I proceeded slowly. It seemed to be okay but now I wish I'd listened to my instinct. Perhaps it is aspiration of saliva not the food. It may be difficult to determine. And we may need to wait until we get further test results later in the week. Of course I'll let everyone know as soon as I can. I'm trying to have a positive outlook and be happy that we caught it now before she had more extensive damage to her lungs. So even though it's bad news it really is good.... That we came here and found it before it was too late.

Today we had quite a wait. The fun thing is that to pass the time we played patty-cake with Ainsley. We play at clapping regularly but it's taken a really long time just to get her to straighten both her hands. She has so much fun clapping but has never tried to clap by herself. Today, after I stopped clapping her hands together, she clapped them together herself for the first time! What an amazing change out of nowhere. So that is the good.

That, and we ran into a friend from the trach forum and got a picture.

Tomorrow is going to be a super busy day she goes under anesthesia in the morning for the scopes, we get to meet Dr. Cotton and Ainsley will be admitted to the hospital so it could be super busy but I will try to post.

1 comment:

  1. My mother has bronchiectasis, it can have its ups and downs, but its totally not the end of the world, I promise. With a little effort on things that could trigger problems (smells, humidity etc) life goes on pretty easy for some people.

    I am sorry you guys aren't getting the answers you hoped for. I am also sorry it sounds like she will have a trach for a long time.

    You guys hang in there, I know its been a rough week. We will be thinking about you.

    (mom2twinsplus1 at aaron's trach board)