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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, June 12, 2009

We're Home!

We arrived home today at about 2:00PM. Unfortunately, the decannulation was not a success. We are disappointed obout this, which is to be expected. But this doesn't change how much we love Timmy, the quality of his care and the activities that we do with Timmy. Some of the activities will just have to be adapted, so that he can participate.

When Dr. Noah (fellow that works with Dr. Z) did the scope today, He reported that the area where the lasering had been done looked great, but he found that Timmy STILL has a floppy airway just above his vocal cords and that his tongue almost completely obstructs his airway. We got this same diagnoses with Timmy's first ENT (Dr. Hulka) a couple of years ago. This made the 3(?) scope that Dr. Z or one of his fellows have done. We specificly asked previously IF they had seen a floppy airway or a tongue obstruction, and we were told NO!

When we arrived and discovered that the game plan had changed, I somehow knew that Timmy wasn't going to do well. Dad spent the majority of the week with the coordinator to set everything up for this scheduled procedure. He was told that Timmy would be having the scope preformed in one of the Pulmonology Treatment Rooms under a mild sedation. Instead, Timmy was taken to the OR, where he was give general anesthesia and completely snowed under. When they woke Timmy up, I know for sure that Timmy panicked! This was most likely the cause of the tongue obstruction. I feel that the tongue obstruction is strictly positional. As for the airway issue, yes it is possible that is still there and "could" still pose a problem. Timmy has had a recent sleep study. And again we asked if he had any obstructions that wre noted, we were told NO!

When Timmy removes his trach while at home, he DOES breathe through his mouth and nose and he shows absolutely no signs of distress. This is another reason WHY I feel that the tongue obstructing the airway is positional. Timmy has had MANY scopes and the tongue obstruction has only been seen twice. Hmmm, one would think that IF the tongue was really an issue, wouldn't it have been seen more frequently with Timmy had the scopes???

The airway team (ENT's, Pulmonologist, Peds. Respiratory and whoever else) will meet again on Monday to discuss Timmy's case, to see "what if anything" they are willing to do to solve the airway and tongue obstruction issues. It was my impression, while speaking with Dr. Noah today, being that Timmy has so many other medical issues, the airway team will most likely decide NOT to do anything further.

IF by some chance the airway team decides to proceed, we still have two options, which may be open to help resolve the airway issues.
1. We could let Dr. Z and the rest of the team use a rib graph to build up Timmy's airway. There is also a procedure that would be needed to bring the tongue more forward in the mouth.
2. We can contact the ENT team at NIH (National Institute of Health) they have devised this balloon type thingy that they have been doing trials with to help enlarge and strengthen the airway. I don't have much info on this. It was only mentioned to us briefly a while back. Timmy would have to be evaluated at NIH, before they would be able to make a determination if he is even a canadate for the procedure.

Dad is going tomorrow to buy the kids a pool. Yes, Timmy WILL still get to go swimming. I came up with the brightest idea so that this could happen. (Okay, I'll admit, I'm probably not the first person to ever think of this.) Dad will be purchasing a 12x30 pool. With the pool filled to its minimal water level, Timmy will fit perfectly while safely secured into his bath seat. There is also the option of a float, but this puts Timmy above the water and not in it. This makes water play not as fun, in my opinion. Especially for a boy who ""Thinks" he is a duck or a frog!

1 comment:

Michelle said...

I'm sorry to hear the decannulation didn't go well. Don't give up. He'll get stronger with growth. Our daughter's breathing totally changed as she grew. Enjoy the pool!
Michelle & girls in WA

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