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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, February 18, 2011

The Curse

There are two statements, which should NEVER be thought of voiced in the presence of Timmy. They are, "Good job Timmy! I'm proud of you" and "I have figured you out Timmy." If either of these statements are thought or voiced, Timmy will either refuse to repeat the task that he had accomplished perfectly. Or he will throw you a curve ball.

It was told to me that one of Timmy's teachers (I won't mention any names) made a similar statement to Timmy, "I've got you Timmy." So of course, today he threw us a curve ball.

In the past 7 years, when Timmy has had high blood glucose levels he has NEVER spilled ketones into his urine. His blood glucose levels have been well over 600mg/dl and NO ketones.

Even though Timmy has never spilled ketones, Timmy's Endocrinologist insists that when Timmy has a high blood glucose level that we test Timmy's ketones.

Timmy wears an insulin pump. Last night was a scheduled site change for his insulin pump infusion set. At bedtime Timmy's blood glucose level was slightly elevated (264). It was time to play the guessing game with Timmy's body. Is Timmy's glucose level elevated because we have a bad infusion set site? Is the insulin bad? Or is this just Timmy's body saying "Nah, Nah you can't figure me out!" So I opted to assume it was just Timmy's body. I treated the high level and gave Timmy his bedtime snack. I chose not to check ketones, being that I would have to wake Timmy up to retreive the cotton ball from his diaper in order to test for ketones.

Bad call! This morning when Merry, Timmy's Home Health Nurse arrived and checked Timmy's blood glucose level, it was 490. Yikes! Merry changed the infusion set site. After feeding Timmy breakfast and treating the carbs per Doctors orders, two hours following breakfast Merry decided it best that she check Timmy's blood glucose level again. Timmy's level was still high (450). Merry tested Timmy's urine for ketones. Have you guessed where I'm going with this story yet? Yep, you guessed correctly, Timmy had a moderate amount of ketones in his urine! After 7 years of NO ketones, we now have ketones.!? To say the least we were shocked. Merry even opened a brand new vial of test strips and got the same result.

Now dealing with Timmy's diabetes gets very scary.  Diabetic Ketoacidosis is a very dangerous/serious condition. What signs if any will Timmy exhibit in relation to diabetic ketoacidosis? Up to this point, Timmy has NEVER exhibited any signs of either low or high blood glucose levels.

Where we will sail off to in our new diabetes adventure? We shall see. Timmy's body will determine our next port destination.

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