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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Wednesday, June 10, 2009

"D" Day is here!

"D" is for decannulation. The airway team, which consists of Timmy's ENT and his Pulmonologist (I'm not sure who else was involved.) had a meeting on Monday. They reviewed the video that was taken during the lasering of Timmy's airway, which showed his upper and lower airway. Everyone felt that being everything looks remarkable that it would be ok to proceed with decannulation, rather than waiting for another 1-2 weeks. Timmy has to be a UNC hospital by 7:30am on Friday. Someone from the Pulmonology team will use a scope to take a quick looksie at Timmy's airway, just to make sure tha there isn't way swelling, tha it is healing properly and to make sure nothing else is going on, which would delay decannulation. At the time of the scoping, the Doc will pull out Timmy's trach. They will place a sterile bandage over the stoma opening. Timmy will have to stay 2 days in the hospital for observation. The "team" feels that within the 2 days we will all know for sure if Timmy will pass the tests or fail. We were told that typically "IF" a child is not going to tolerate having their trach out, it will be apparent within a few hours. And if there is going to be an issue to arise, it most likely will appear at nap time or when the child goes to sleep for the night. We were told that "IF" a child tolerates their trach being out for 2 days, they typically will continue to do well.

I'm feeling so many emotions right now. I'm excited, nervous, scared, worried, anxious, excited! I want this to happen soooo bad. BUT do not want to have to face the let down "IF" for some reason Timmy should not tolerate the trach being out. My biggest fear is that most likely Timmy will fail at night while sleeping, because he is such a shallow breather.

Keep checking back, I'll post updates on how Timmy is doing.

1 comment:

Michelle said...

I'll be praying decannulation goes well.

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