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.