Re: Trach Suction/Go Bags to Liz

December 11, 2006

Liz,

From my knowledge, many kids with CHARGE have trachs for a limited time

period. Some for a few years and some for many years. But I don't believe it

will be a life long thing for us. Ethan always had excessive secretions and was

in the NICU for the first 3 1/2 months of his life. He did have bilateral

choanal atresia and was repaired at 7 days old. One nare is 100% open and the

other is 50% open. After he was released from the NICU, he developed

aspirational pneumonia and was rehospitalized for 3 weeks and on a vent (he did

and still does not have a nissen). But he kept getting sick and rehospitalized

after the pneumonia. The doctors felt that it was an airway/secretion issue and

not a reflux issue so that is why we opted not to get the nissen. So he was

trached at 6 months. His lungs were damaged from the pneumonia and required

oxygen at all times. But over the years, he is getting stronger and his lungs

have improved where he only needs oxygen when he is

sick. He needs suctioning still, but less and less as time passes. Everytime

he gets sick, I can't imagine him without the trach. It has helped him develop

and not to work so hard on breathing. He hasn't been hospitalized now for

illness for 1 1/2 years and I think in part because of the trach.

Obviously there are risks involved with the trach and children with trachs

have to be monitored at all times. Ethan has nursing care 16 hours a day which

is very helpful so that he can go to school safely and we can get our sleep at

night.

I hope I covered all of your questions, but if not, feel free to ask.

Jody

Jody - mom to Ethan (ChARGE) and

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