Monday, November 17, 2008

Mepilex AG - great product, amazing company!

I've talked about all the nice people we've been fortunate to meet since Cicily was born, and now I have to share the wonderfully nice companies we've been fortunate to link up with.

We just recieved a generous supply of Mepilex AG samples from the Molnlycke Health Care company. The VP of marketing for the company found the blog post about how well Mepilex has worked for Cicily's g-tube site and he contacted me. I was in tears when I read his message, being so in awe and grateful that people care so much about my Cicily. Now I don't have to worry about the insurance company telling us one day that she's had enough Mepilex and they won't cover it anymore!

We also want to say thank you to Southwest Airlines. They have a voucher program for medical needs. I applied for tickets to fly to San Francisco to meet with the ear doctors and they gave us vouchers for Cicily's ticket and part of mine. I (definitely) fly SWA!!

As I've mentioned before, Cranial Technologies provided Cicily's helmet that she wore post- jaw distraction.

It's a wonder for me to be Cicily's Mom and see so many people take an interest in her well-being and be touched by her lively spirit.

Thursday, November 6, 2008

Next surgery

Rescheduled again for Mon. Dec. 8th. This time due to hospital PICU space. (third time's the charm I hope!)

Rescheduled for Mon. Dec. 1st.

Nevermind - This surgery did not happen today. Insurance issues are mostly to blame. Hopefully we can reschedule it for next Mon???

Cicily will go in for surgery on November 17th to remove a granuloma that has grown in her trachea. A granuloma is a little ball of scar tissue. In this case, it's caused by the trach irritating the tissue around it and Dr. Mancuso will simply cut and cauterize it right off. He said it's quite straight forward. Dr. Mancuso will also perform another laryngoscopy and then we'll proceed one of 3 ways:
1. Cicily's airway will appear adequate and she will have her trach capped in the PICU overnight to see how she tolerates breathing without a trach in all different circumstances.
2 . Cicily's airway will still appear too small from the laryngoscopy and her trach will still be necessary and we'll come home.
3. Cicily's tonsils will be removed to create a larger airway (and get them out of the way so they cannot cause future trouble) and he'll see that her airway is adequate enough to cap her trach for a decannulation trial at a later date when she's recovered from her tonsilectomy (I'm assuming January).
We're hoping for scenario #3, eventhough it means she'd still have her trach until January at the soonest and till she's much older at the latest. I'm nervous about Cicily transitioning from a trach to no trach during the sick winter months anyway. I will update on the 17th or 19th!