Weekly CPAP Update

Cedie is still progressing on her CPAP trials. She is now resting (on her rate) every 4th night. We are still on track to have her last night on the vent rate be October 31st.

Last Friday morning she had a couple apnea alarms show on her vent. She was on her rate Friday night (as scheduled). Sunday morning from 4am to 5:30am she had 3 more. So, Sunday night I put her on an apnea monitor (we haven't been wearing it because Cedie sweats too much at night and the belt gave her a rash similiar to a heat rash) Monday morning her vent apnea alarm went off but not the apnea monitor alarm.

Monday morning I called her RT (respiratory therapist) and explained the situation. He came out to the house and checked all of her equipment. He explained that the vent would alarm after 3 seconds of no breathing whereas the apnea belt is a more normal 20 seconds. He said as her lungs get stronger she will slow her breathing down to a more "normal" rate. He had me call her pulmonologist just to let him know.

Her pulmonologist actually called me back personally. After I explained the alarms and told him how good she has been doing he said that she sounded like she was tolerating the CPAP well and we should continue to move ahead! He said he wasn't worried at all and that we were doing a great job! My gut was telling me all along that everything was fine but the confirmation was really nice. Back when she was in the hospital for all those months I was able to she what her "not tolerating" looks like on several occasions. She is soooooooooo much better, stronger, etc than she was earlier this year. It continues to amaze me.