So, Kiera's bronchoscopy wasn't as nice as it could have been. Plus, Kiera, is pretty ticked off about the whole thing so trach changes have become a bit more adventurous. She has a granuloma in her airway above the trach that needs to be surgically removed before with can look at decanulation. It looks like the ENT doc may not be able to get her in till late August! I am pretty dissappointed since we only have a small window when they will decanulate. (No decanulations happen during RSV season). Then I had the pleasure of the med frag case manager telling me, "You need to get on this. This is very unusual for a child to have their trach this long. None of the kids I work with have had theirs this long." etc, etc, etc...I paraphrase. Like I haven't been trying to get this done since April!? Like I don't realize Kiera's course is extreme!? Like I need someone pressuring me to get mor things done!? ^%@(%^$ Thanks for the input. Of course, what does she know...5 - 9 years seems to be a norm for some of the people I have met with airway issues.
Anyway, we're in limbo for a little while. Kiera's EEG was abnormal while sleeping so they increased her seizure meds. Food is getting better, and a formula change to Compleat is a huge improvement in the diaper department. Gotta go for now. Just had to vent.
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2 comments:
Oy. Maybe invite these folks to spend a week at your house so they get a first hand view and then let them voice their opinions.
Oy (again).
Hi
My name is Jenna and I came across your site. Kiera is an amazing, courageous strong and determined fighter. She is a brave warrior smilen champ and an inspirational hero. She has a beautiful smile. I was born with a rare life threatening disease, and I love it when people sign my guestbook. www.miraclechamp.webs.com
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