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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....

Monday, April 27, 2009

Update on Surgery

Timmy had surgery today to remove his tonsils and adnoids. Surgery went very well. He came through like a trooper! He isn't having much bleeding. And he isn't showing any signs of being in pain. We are giving him Tylenol with Codine every 4 hours and he is receiving a stress dose of Cortef to help with any stress. We will keep him home from school tomorrow just to give his little body an extra day to heal.

In 1 month Timmy will be having another surgery. This surgery will be the most important surgery of all. During this surgery Dr. Zdanski will be lasering Timmy's airway to remove scar tissue that has built up from the zillions of re-intubations that he had to undergo as a preemie in the NICU. One week following this surgery, Timmy will be hospitalized for a few days, while Dr. Z. removes Timmy's trach to see how he will do without the trach in place. If Timmy fails this test our only other option is to have Timmy to undergo yet another surgery. This surgery is very painful and stressful. Cartilege is removed from the ribs and used to build a larger airway. Being this surgery would be so hard on Timmy's little body, I don't know if we are willing to put him through that much pain and stress.

We love Timmy unconditionally with or without his trach. There are advantages as well as disadvantages of Timmy having a trach. With the trach we have an established airway if he should get really sick, which makes managing his airway on a ventilator easier. Doctors and the anesthesia team feel more comfortable about putting Timmy to sleep for surgeries with the established airway, due to Timmy's medical conditions. With the flu, cold or a stuffy nose Timmy doesn't have to work as hard to breathe. Some of the disadbantages of Timmy having a trach are; When we travel with Timmy we have to take along alot of equipment, suction machine, trach care supplies, suction catheters. There is also the extra supplies that are needed to manage Timmy's trach that we have to have a place to store so that they can be readily available when we need them. The biggest drawback is the fact that Timmy can't go swimming. Timmy LOVES to be in the water. He really enjoys his bathtime. And having him to never be able to experience the "real" thrill of being able to splash while in the water will be hard. Even without the surgery to re-build the airway, we can honestly say that we tried everything in reason to give Timmy the best possible chance to live life without a trach and feel good about our decision.

We received Timmy's MRI results back today as well. All of Timmy's abdominal organs look remarkable! The team at NIH and Timmy's Endocrinologist and Genetist all thought that the number one cause of Timmy's diabetes is caused by a malformed pancreas. We know that this isn't the case. We see Dr. Ali Calikogl0u (Endocrinologist) on May 5th. at this time we will discuss Dr. Ali possibly doing a pancreas biopsy, so that further testing can be done to "try" to find out the exact cause of Timmy's diabetes.

I would like to ask everyone to keep Timmy in your thoughts, that this surgery heals quickly and that the following surgery in 1 month works!

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