Well made it 11 days home, new record. Going back to Victoria general tomorrow morning. After a week of doctors talking to other people besides me my message finally got across!! Since last Thursday the doctors have still not got a hold of me about changing Hannah's ventilator settings so it doesn't ring off apnea every minute. If one of the RT's at the hospital didn't show me how to do the master unlock I would be ripping hair out and punching people. I mean.. there's only so many beeps you can handle..
They want to take a closer look at Hannah and possibly give her a cuffed trach. So sad about this.. we have been putting her on the passy muir valve to make her vocalize more by getting air to pass threw her mouth and nose and now that may be the very thing that is causing the problems... It sucks that its only a problem when she sleeps though, so I will most likely be able to deflate the cuff during the day but its just one extra dangling thing for Hannah and Hailey to grab at.
As for the heart concerns I have.. it turns out she hasn't had her heart looked at in a very long time. I'm thinking the last time was in the NICU. So maybe I'm on to something or maybe I'm crazy either way, when you send a baby home from the hospital for the first time who has a known heart condition you would think they would take a look at her heart before setting her free. They can't even reassure me that her heart was good on such and such a date. BUT most of the signs that were scaring me to think maybe it is a heart thing have gotten a little better since we started refeeding and changed her ventilator settings. Hannah has been sleeping most peacefully (less restless), low/normal heart rate while a sleep and not puking as much. Butt she still has pale days/times, feels cold, has more troubles breathing at night, sweating, puking and is a little more tired then usual.