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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....

Tuesday, August 4, 2009

The One Zillion Dollar Boy

In the 1970's we had the Six Million Dollar Man and the Bionic Woman. Almost 4 decades later we have the Incredible Miracle Zillion Dollar Boy! Isn't he cute???

It has been 2 weeks since Timmy had his trach removed. He is doing TERRIFIC!!!!! He had a decannulation follow up appointment on July 29th, at which time a sleep study was scheduled for Monday Aug. 3rd. Yeah, we were surprised and impressed that they were able to get the sleep study scheduled so fast.
According to the paperwork that we were given for the sleep lab, we were suppose to arrive by 6:30PM. We called and requested a later arrival time, because Timmy doesn't typically go to bed until 9:00PM. Big mistake! And as the saying goes, you learn from your mistakes.....
We arrived at UNC Hospital at a little past 8:00PM. It took Timmy's sleep tech 1 hour BEFORE she came in to hook him up to all of the necessary wires for the sleep study. It takes about an hour to hook someone up to all of the wires and make sure everything is hooked up and working properly. So of course, Timmy fell asleep. So an hour of study time was lost.
Dad asked how Timmy did, but of course the tech "can't" and/or wouldn't say anything except that they were able to get 5-6 hours of study time. DUH! At least 6 hours of study time, whether the patient sleeps or just lays awake is needed BEFORE insurance will pay.
Timmy has an appointment on Aug. 19th with his ENT (Dr. Zdanski) to go over the results of the sleep study. Once the sleep study is scored, it is passed on to someone in Pulmonology for review. So hopefully Pulmonology will have time to have reviewed the study before our visit.
My main concern is that Timmy may be having some apnea episodes. He doesn't drop his oxygen saturations, but if he is sleeping on his back, he does snore. In my opinion, when Timmy is placed on his back to sleep his sleep is restless, compared to that if he is placed on his side, which in my opinion is a much more peaceful sleep. Even though Timmy is hooked up to a pulse/oximeter monitor at night while he sleeps, I find myself going in to check on him several time a night. Once we get the results to the sleep study, IF the study shows that everything is ok, I'll be able to relax and get some much needed rest myself. But until then I'll worry and keep my nightly vigil. Isn't that what a mom is suppose to do?

1 comment:

Michelle said...

Don't you just hate that when they won't tell you anything! Emily is going to have an overnight oxcymetry soon. Hoping your results are good.

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