Avery's Family

Avery's Family

Monday, October 29, 2012

Guess who's 18 months old

                                                               Sweet little angel

                                                           The 3 amigos

                                               All four of my kids have worn this costume
                                                     Picked the cutest pumpkin in the patch
Hard to believe my baby girl is 18 months already, she still seems so little to me. Avery had her sleep study on October 1st, this was to see if she would still need her trach.  It was a nightmare. For 5 hours Avery gasped for air. Finally the on call DR. came in and put her back on her ventilator.  Needless to say, after watching that, I think I’m okay with her being on the vent for now.  What I don’t understand is Avery can breathe fine with her speaking valve, which allows air in and forces air out through her nose and mouth. She doesn’t have any apnea that I can tell with this.  When she is capped she struggles to breathe in when she sleeps. If this was central sleep apnea it would show up no matter what valve she was wearing.  Avery had an Appt. with the vent clinic on October 18th. I asked these questions and was basically told she needs to keep her trach and they will do another sleep study in a year in a half. I’m okay with her keeping the trach if she needs it. I’m not okay with it if it’s just because the Dr.’s are comfortable with her having it. They said her sleep apnea is mild now. I think there might be some obstructive airway issues this would make sense. Anyhow, I am waiting to see the ENT to request a bronchoscope.  I know I’m not the doctor, but I am Avery’s advocate!

1 comment:

  1. Hello! Avery is beautiful. I was reading your blog to get more info about life with a trached child. My daughter has full trisomy 13 and is having respiratory issues. It's definitely scary to think about, but we'll do whatever she needs. Bronch did not show airway issues but she behaves as though she has bronchomalacia. What kind of symptoms did Avery have prior to the trach?