Bryson's Blog

Living with Trisomy 13

Saturday, August 29, 2009

Setback-not coming home (just yet)

A couple of days ago, Bryson had a setback. His CO2 levels got very high, in the
70s though his oxygen saturation levels were fine. This means that even though he was breathing in enough oxygen, he was not expelling enough of the CO2 gases and it can become toxic. His feeds through the NG tube were also not working as he was vomiting a couple of times and that causes concern of aspiration. We came to find out that one of the nurses gave him the wrong type of formula, one that he did not tolerate when he was on formula as a baby. They switched back to the correct formula and reduced the intake to give his stomach a chance to handle it gently.

Dana & TRavis talked to the ENT (ear nose throat) and the Traecheostomy (if there is to be one)is not scheduled until Monday or Tuesday and then Bryson will have to be transferred back to the PICU unit. They didn't want to do it on Friday over the weekend when the hospital is nearly a ghost town. The docs are only on call during the weekends. This would give him a week in PICU with their full attention again.

If he could just start swallowing and coughing better and to keep his airway clear, would be wonderful and the traech may not be needed. He will also have to be on a C-Pap machine and that will work fine with a traech as sometimes, his tongue will obstruct the airway.

He is stiring a bit more these days which is also a good sign. But the Neurologist doesn't feel that his movements are cognitive movements, only reflex. I'm not sure. He responds to his Mommy & Daddy differently than he does with the Neurologist, whose job is to poke and prod and cause pain for a reaction. We take a much gentler approach.

Dana & Travis have also interviewed 3 Home Health Care Nurses to find a good fit. They bring many years of experience in Pediatric Nursing to the table and since they have to work in Dana & Travis' home, they will also need to be non-conventional in their approach to Bryson's care and development as they have spent three years challenging Bryson to do more, to adapt to survive rather than to just be a Faberge' Egg.


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