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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....

Wednesday, October 28, 2009

ENT Visit Today

Timmy had an ENT (Ear, Nose, Throat) visit with Dr. Z today. Dr. Z checked Timmy's ears. Ear tubes are still in place and no signs of any ear infections. Yay! We discussed Timmy's last sleep study results. Timmy has a couple of episodes of centeral apnea. BUT Dr. Z feels that this isn't a concern at this time, being that Timmy only dropped his O2 saturation level once (90) for only 1 minute. Nothing else of concern was noted on the sleep study.  We discussed Timmy's PRN oxygen orders. Dr. Z doesn't want Timmy's O2 saturation levels to drop below 92. If they maintain below 92 for a period of time without rebounding, he wants us to call him or the Dr. on call immediately.

It has now been THREE (3) months since Timmy had his trach removed. WOW, I can't believe it has been that long already. Time sure has flown by. What better way to memorialize this event, but a picture of Timmy with the Doctor who made this whole event possible.  (Sorry the picture quality isn't that good. All I had with me was my cell phone camera. I have asked Santa for a Digital camera for Christmas.)

After scoping Timmy to evaluate his airway, Dr. Z had faith that Timmy "could" possibly be successfully decannulated. And Dr. Z believed in us, as Timmy's parents, he felt that we knew Timmy better than anyone. And from the signs that Timmy was showing us, he definately was ready to have his trach removed. Thank You Dr. Z for being willing to give Timmy and us this wonderful opportunity to shine and make our everyday lives with Timmy MUCH easier!

Timmy also received his flu shots. Yes, both, the seasonal and the H1N1.  It must have been meant for Timmy to have received the H1N1 injection. I asked Dr. Z his opinion about Timmy getting the flu shots. And Dr. Z said "Yes, Timmy should most definately get them. BUT we are completely out of the H1N1 vaccine. The last dose was given early this morning" We agreed to just go ahead and have Timmy receive the seasonal flu shot. At least, this way he would be half protected. When we met with the Nurse in Pulmonology (Amber) she informed us that they "just" had received a shippment of H1N1 vaccines. Boy talk about Luck and Timing! Sooo, we agreed to have them give Timmy the H1N1 vaccine as well. Floyd spoke with Timmy's Endocrinologist later in the evening and Dr. Ali (Endocrinologist) stated that the hospital had ONLY received 30 doses of the H1N1 vaccine. And Timmy was the 1st person to have received a dose.

So now we wait and see, just how affective these vaccines will be for Timmy.  All of the talk on the news about young children and adults dying from contracting the H1N1 virus scares the Beegeebies out of me! So hopefully, the pain of these 2 injections will protect him throughout this entire flu season.


ANewKindOfPerfect said...

Oh man, you guys are lucky. I couldn't find the shots here anywhere, and now both of mine have it. I am scared to death how this weekend will go with my Peanut.

Sheila said...

I'm so glad to see that Timmy got both his flu shots too! As you've probably read on the Yahoo board, this flu virus also scares me, and I'm so glad I was able to finally find the shots for Grace too.

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