Monday, November 7, 2011
Making difficult decisions
We finally had our meeting. Neurology, pulmonology, and the team. Jeremy and I have some big decisions to make. We know that Avery has obstructive and central apnea. Oxygen helps with the obstructive apnea but not the central apnea. Her brain is telling her not to breath, so at night when she sleeps she stops breathing. The doctors are telling us she needs a tracheostomy and a vent for at night. There is decompression surgery(brain surgery) that can be done but its not likely to work. In order to have this surgery they need to keep Avery in the hospital for a few more weeks so she can heal from the virus that has played havoc on her lungs. Even then she may not be in good enough shape for the surgery. The surgery is very risky. Our other option is to have them put in a tracheostomy until she is bigger and can tolerate the surgery. If she has a trach put in she will remain at the hospital for 5 weeks following surgery. This is so Jeremy and I can be trained on how to care for her at home with a trach and vent. Our home will also have to pass a home inspection to accomadate the hospital equipment.