Welcome to JJ's Journey!

A day in the life of Jenna! Jenna has Spinal Muscular Atrophy (SMA) Type 1. SMA is severe neuromuscluar disorder that effects the muscles that help her move, eat, and breathe. Currently there is no treatment or cure. For more information on SMA, please visit www.fsma.org or visit www.our-sma-angels.com/jenna!

Monday, February 21, 2011

Respiratory, Iron, and Hospital Bed (Living w/ Spinal Muscular Atrophy)

Jenna is doing better!  We had to increase her treatments for a few days and add in a Xopenex neb 3x/day and extra "shaking" w/ the Chest Vest, but I think we got it all out.  No more desats while laying on her left side! 

She is also doing really well w/ the iron supplementation.  I am truly shoked at this b/c she has never been able to tolerate iron.  I guess after fixing her GI issues w/ her last hospital stay has also helped w/ tolerating the iron.  Whatever it is/was, I'm glad it's working now.

We are still fighting Univera Healthcare for Jenna's hospital bed.  This whole thing really gets me!  I just have a hard time believing that they have a medical policy that pretty much states that if you are 100% disabled (like Jenna) then it is not medically necessary to have an electric hospital bed.  Crazy.  Well.... I haven't given up yet.  We are doing a Self-Insured External Appeal w/ them and hopefully this outside doctor will read all the documentation and realize it is medically necessary.  I guess we will see.

So I will leave you w/ a pic of Miss Jenna enjoying her Valentine's Day.  Hope you enjoy it as much as she did!

1 comment:

Devon said...

Stupid insurance companies. Stupid!!!

Glad Jenna is doing better. Keep doing well, Jenna!