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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....

Friday, June 5, 2009

And we wait....

Timmy's surgery went very well. Timmy isn't in any pain. There was only minimal scarring, his nasal passages are still open and his airway is of average size.

But decannulation has been put off for right now. By putting off decannulation, we will accomplish two things. 1. Timmy will have time to heal. 2. Timmy will not have to go back to the OR to be scoped to check his airway. Dr. Zdansky is going to release Timmy into the care of Peds Pulmonology. Peds. Pulmonology is able to admit Timmy to the regular Peds. Unit and do a scope to check the airway in one of their treatment rooms. The only thing that Timmy will need is a mild sedative. There won't be the stress and risk associated with anesthesia or the many sticks that most of the time are necessary to obtain IV access. IF the all of the doctors are willing to work together, this decision should only set back decannulation by a week or two. There will be a meeting of ENT and Pulmonology on Monday. At this time the doctors will discuss Timmy's case and agree on a date for decannulation. By mid week, we will start calling if we haven't heard anything to push along the process, so that we can get a date. We really would love to have Timmy's trach out by the time he starts school in July.

But like the saying goes; Patience is a Virtue! Which I don't have much of....Patience.

1 comment:

Michelle said...

Praying for patience.... oops, I mean decannulation!
Michelle in WA

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