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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, March 27, 2009

Change in surgery strategy

Timmy had the 1st of several surgeries that is needed to possible prepare him for having his trach removed.

The original plan was to do a Ph Probe study to check for possible reflux, re-open the nasal passages and remove the tonsils. Dr. Zdanski decided that being that the Ph Probe had to remain in place for 24 hours, that removing the tonsils wasn't in Timmy's best interest at this time. So Timmy had his nasal passages re-opened and the Ph Probe placed. Timmy was hospitalized over night for monitoring.

Timmy faired well from surgery. He had some bleeding from his nose, which is expected. By morning there wasn't any "fresh" blood seen. He required a few doses of Tylenol with codine for pain management. By morning Timmy was all smiles, showing no signs of pain or stress.

I have to send out a "We're Proud of You!' to the student nurse anesthesist that helped to take care of Timmy. I wish I could remember her name. What she did took us all by surprise, that no one caught her name. She came into the room where we were waiting to go back for surgery. She lets us know that the OR was ready for Timmy and that she was going to carry him back. Timmy was sitting in a reclining chair. The student nurse anesthesist gets down to Timmy's level, takes his hands into hers, tells Timmy her name and that she was going to pick him up. Timmy has had MANY doctor visits and hospitalizations and NO OTHER nurse or Doctor had ever taken this approach. I was so impressed that I made sure that she knew that she had done exactly what a blind child or their parent would have expected her to do. Now if her excellent bedside manner were contageous!

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