Thanks for all your prayers and well-wishes. It turns out Emily has Influenza B, so that's what we're dealing with. Not sure if she had strep and now the flu -- regardless, she's doing ok. We're not on any O2 and the Q4 treatments seem good, but we're gonna watch her and see what if we can determine we'd be better off at home. She's tolerating her feeds well and generally in good spirits, despite not really wanting to come off BiPAP.

The big news is that we have found a hospital that we will be returning to, Sinai Hospital. A couple SMA families have used Sinai and said good things about it - and after some research we decided to try it out this time. Amazing! They're doing an incredible job caring for us and working WITH us in every move. They are very family friendly and ready to follow our lead. They've created an "Emily Book" full of our Non Invasive Ventilation protocol and other Spinal Muscular Atrophy (SMA) care info, so ANYONE that is going to deal with us and Emily can read things over first. They've also given Emily a special status that allows us to skip the ER and admit straight to the PICU in the future. We just let them know and they'll get everything for Emily's arrival as long as there is an open bed. Very cool b/c the ER here was less than impressive.

Anyway - unless I'm dreaming you can imagine how nice it is to be treated well in our circumstances and not have to argue with medical staff about what Emily needs. We've even learned a few things from the Respiratory Therapists since being here. :) Even though they have not seen a Cough Assist here for many years (or at all) they love it and have caught right on. Good stuff.

Hoping to be home soon, but not rushing things. Peace <><


Devon said…
Glad to hear it. Sinai sounds wonderful! Get better soon, Emily!
Sky said…
Nate are you guys going to stay or do you think you can master the flu at home? I hope she is better soon sounds like you have found a treasure with Sinai. Prayers and Hugs Sheila and Sky
Eileen said…
Great news! It is good to hear a positive report about a hospital visit. Hope you can all come home soon!
Mary said…
That's GREAT Nate! Give Emily a hug for me!
So sorry to hear Emily has the flu, I am still praying for a fast recovery and you guys can get home soon.

Wonderful news about the hospital. It is always nice when the doctors and staff are willing to work with you.
Vierna said…
Its always refreshing to hear that a hospital stay is actually going on smoothly. Hope Emily is home soon! Influenza... I thought that one was left for tropical places... Glad things are under control! We'll keep you all in our prayers! :)
v, Mark & Deedee