Road to recovery
So we're a couple weeks into this now. I'm not sure what to call this exactly. Sickness isn't accurate because she was never really sick. I guess, maybe call it her lung issue? Well whatever it is, we've been at it for a couple weeks now at least. Nora is still on her mask full-time - she absolutely does not want us to take it off. When we do have to remove it to cough her or wash her face. She cries and kind of panics until we put it back on. Often at night, when it's obvious she's got something in her throat she'll say "I'm fine... I don't need to cough". She also changes her breathing when someone is around. She disguises the rattle sound so we won't hear whats in her throat. She's afraid we'll take off her mask and cough. Nora also still needs a bit of oxygen at night. when her numbers fall as she sleeps. we're growing used to the loud-as-heck oxygen concentrator running from inside our laundry room [there is a 40 foot hose connected to Nora's BiPAP].
Due to her dependancy on the mask, we have to do BiPAP to BiPAP transfers - meaning while she's on the stationary BiPAP in her room, we bring in the portable unit and quickly move the hose over to it. Then Nora and the portable BiPAP are carried together to the living room, where the BiPAP stand and power cord are waiting. She remains on that machine throughout the day, then we reverse the process at bedtime. This new mask dependancy terrifies us. We know, the longer she stays on her mask, the less likely it will be that she will ever be able to come off it. That is deeply sad, because it marks the end of that chapter in our lives - the chapter where we ccould see Nora's face, and had more freedom.
goodentree /ˈgo͝odənˌtrēˈ/ noun
derived from our last name: Gooden and the idea of a family tree We came up with the name after we made the decision to start a family (have a child).
When Nora was born and diagnosed with the terminal disease SMA, her story quickly spread, and goodentree became established.
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