Bryson's Blog

Living with Trisomy 13

Monday, July 17, 2006

Breathing Problems

There were more apnea episodes yesterday with Bryson. He stopped breathing several times and as what has become the norm now, a few rescue breaths and he would start breathing on his own again. He is now receiving oxygen to keep his blood/oxygen levels up. Dana asked for from Hospice and finally received an Oxy-Hood which looks a little like an astronaut helmet. It only extends down to his neck and allows her and Travis to touch him and change a diaper without him being in an oxygen tent which is more like a plastic box. The thought of him being placed in a plastic box was disturbing. We are still hoping that Hospice can also get a pulse-oxymeter so we can continue to monitor his levels.

This Thursday, Bryson will be seen in Syracuse, New York by a Pediatric Neurologist who can help to determine the severity of his Trisomy 13 and to hopefully help us to map out a plan for his care. Dr. Gregory S. Liptak is a well regarded Pediatrician in New York State and has had many journals published on the care and treatment of Developmentally Disabled Children. He has been instrumental in the treatment of a young woman now 25 years old that was diagnosed with both Trisomy 13 and Trisomy 18. This is nothing short of a miracle! We look forward to him coming on board for Bryson's care and treatment.

Because there will likely be many trips to Syracuse to see specialists at State University Hospital, I will be setting up a fund to help Dana & Travis with expenses that they will incur. If you would like to help out, please e-mail me personally at dori_m@hotmail.com and I will provide information so that you can offer your support to this young family.

We have received many thoughts and prayers from many people from so many places both here in the US and abroad. Please continue to pray for Bryson, as he continues to grow and develop. Please also keep the Arritola Family of Georgia whose beautiful Angel Anthony became a Heavenly Angel on July 2. His mother Janina has posted to this web blog and she has imparted to us and other Trisomy 13 families invalueable information on the care and treatment of her son.

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