Monday, October 24, 2011

Some results

By now, you would think unexpected results would not bring me to tears.   The good news, I guess it was just a few tears rather than a full on cry fest.  Dr Lungs office called and our results from Yale are back.  The bad news, her ciliary hairs (sp ?) do not function properly.  Her first words were...the biopsy was abnormal.  She has dyskinesia.  Well, I throttled into a twenty question frenzy.  She seemed overwhelmed and didn't know how to answer...so she went to get Dr Lungs himself.  He was with a patient, so she said he would call me back.  Her other cultures came up positive for strep pneumo, probably the same reason she is chronically infected in her sinuses.   ? I'm guessing here.  The good news...well, at least it does help to explain why she gets sick so easily.  We have to be vigillant in airway clearance and she even suggested we start doing percussion twice a day.....Lillian will adore that I'm sure.  OH- and there's nothing they can do about it.  She is just high risk for pneumonia and lung infection in general.  So...I give thanks.  I'm thankful we know there is a reason.  I am, however, pained.  Just to hear that things in her body that should work right..just don't.  It hurts my heart, but I am thankful to know. 

2 comments:

  1. Oh goodness! I'm sorry for another diagnosis but am happy that you now know the cause. My cousins both have cystic fibrosis and one of them uses a vest 2x a day to do the percussions. It might be something she wears in the morning watching cartoons and one at bedtime reading stories. Ask the doctor for a prescription and maybe that will help. Just an idea that popped into my head.
    We found out last year that Sophia has an immune deficiency that causes her sinus infections one right after another. I can only imagine how exhausted you must feel worring about Lillian. Prayers for all you!
    Carmella

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  2. As I read your post my heart goes out to you. It brings tears to my eyes. I know not a word I can say will help but I can pray for your station and ask that God brings comfort to you in your times of needs.

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