JCMC: Day 1

We are at Johnson City Medical Center Children's (www.msha.com/ch). We are enjoying this smaller scale hospital way more than a place like Hopkins bc the care is incredibly more personalized and even though we are the first noninvassive (NIV) Spinal Muscular Atrophy (SMA) family they've dealt with they are amiable to our deman...err... wishes. :) I had a couple of great conversations with Dr. Scroth (Peds Pulmo @ Madison, WI) about Emily's care here and that has been reassuring, to say the least. They're using Dr. Scroth's protocols for SMA kids and since Respiratory has never seen a Cough Assist we're training everybody -- ha -- too funny.

Anyway, Emily had a restless day of coughing and coughing and coughing some more. She had a rough time holding her sats for a while, but her end-titles and electrolytes and all the other stuff looks good, so we're doing the right stuff. We only know this drill intubated, so this is somewhat new to us too. Thanks for your prayers and notes of encouragement!!

Sent from my iPhone :: Peace <><


Veronica's mom said…
Hi Guys,
Just letting you know we are thinking of you and sending many good thoughts and prayers. I hope you are on your way home very soon and Emily is feeling much better. It sounds like it's a good place to be (for now anyway!) Good luck and if we can do anything at all...
Debby, Bob & Veronica
great to hear the hospital staff is working with you guys and not against you, that is a direct answer to prayers. we will keep them coming...love you guys!
Barb said…
Once again, Emily is leaving her mark on the world. By the time you leave, the hospital staff will know how to treat the next SMA patient admitted. Chances are it might be a newly diagnosed child or one whose parents are not nearly as knowledgeable and trained as you are.
God bless!
Icedawg said…
Best Wishes, cant wait to hear that everyone is back home again.
We are praying!!! Love, The Ricketts
Anonymous said…
Sorry to hear that you ran into this after Christmas bump in the road. God is still in control and he'll take you though this one too. Our prayers are for Emily's speedy recovery and that you can all return home and back to "normal" very soon. Love Aunt Mari and Uncle Dan
Anonymous said…
Praying for you guys. I am glad that you were able to train the staff; what a blessing to anyone following you. Peace and Hugs,
denise and the kids