Thursday, August 21, 2008

Thursday, August 21st, 2008

A note from Mommy.....

My heart is breaking. I woke up this morning feeling a little disappointed knowing that Peyton will need to keep her trach in for 9 months to a year. Even though I knew going to the appointment yesterday the recommendation is not to decannulate until summer - I was still hoping maybe she would be different. But that disappointment was quickly replaced by crushing sadness. A woman I have come to know as "Tommy's Mommy" posted on the trach website that her son passed away last night. Over the last year I have read the struggles of this little boy and his family. He was a preemie and had lung disease and congenital heart defects which combined resulted in a his trach. In order to do the needed heart surgeries to correct the defects, the surgeons wanted his trach out as it is was risk for infection. Tommy was decannulated a few weeks ago and even made it out of the hospital - but within a few days returned due to problems managing his secretions now that he was a "mouth breather". The trach was put back in - but they were starting capping trials again (cover the trach but still leave it in). There was hope that they could get the trach back out and send him home again. But it was all too much for his little body - already compromised with heart and lung issues - and he passed away last night. I have never met this boy - I only know him through pictures and videos and the postings from his mother - but I cried as if he was my own family. This devestating news is a reminder to me of the tight rope we walk with these children. There are no guarantees. I have to remember to enjoy each day that we have with Peyton and not spend so much time worrying about the future. Tommy's Mommy will be in my thoughts and prayers.


  1. Peyton(and mommy),
    I would't even presume to have the
    right words to comfort mommy right
    now on a loss she so profoundly
    feels for people she never even met.I feel even more how special
    you are Peyton, because you are
    leading us all on your journey to
    experiencing people and emotions
    we might have otherwise missed in
    our journeys.My thoughts and prayers today will be for Tommy
    and his family.I hope they find
    strength and love in each day ahead, and tell mommy I'm crying
    to for a little guy who I've never
    met.It makes me feel as though we've been " touched by an angel".
    Granma Mower(Mom)

  2. I will also be praying for Tommy's family, and hope that his mom is able to get back her other 3 boys soon to help comfort her during this difficult time.

    Peyton is lucky to have a GREAT set of lungs, and a heart condition that is closely monitored, so this is not something to fear with our sweet girl, as she will make it through the decannulation like a trooper - as she has done with EVERY procedure ever thrown her way.

    Your birthday is almost here sweet girl, and I can't wait to share it with you!

    Love you!

    Aunt Kristin