Friday, July 26, 2013

Update on Bryce - My Angel -

 I have been my son's sole caretaker and advocate until recent events, working with a home health team and as well as a medical team.  I wasn't able to financially make the 2013 SMA conference in California this year, but I was able to speak and consult with the experts. I am grateful for my local SMA moms as well who have taken me into their home on many occasions, walking me through the feeding pump, diet (especially the AA diet) and  other helpful routines. Many of my friends and those from my mom's MOPS group, as well as friends at St. Matthews have been by my side.

I love the continued support of providers and Early Intervention.
 Bryce  now requires night oxygen. It was communicated to me in early June  that Bryce’s needs with oxygen now qualifies him for the medically fragile program; thus providing the nighttime nursing I had been waiting and praying for. I had planned on returning to work once the nurses began.
The real messy part is that the overall lack of consistency at our recent hospital visit (as we have had 8 visits this year), the Palliative team and the 6th floor doctors at Legacy as well as Steve's unwillingness to sign Bryce's Physician Orders on June 21st resulted in a complex situation. 

 It appears we do not agree on the quality of life noninvasive care of bipap vs the invasive tracheostomy choices for our son. 


1 comment:

  1. Jenni, i love you so much and hope for positive changes in the coming weeks. I know your struggle has been more difficult than i can possibly fathom, and i want you to feel secure in the knowledge that im here for you if you ever need to talk or leech off some of the poison that i know must be in your soul. I can't wait to introduce Miles to you and have him give you some good juju with his happy smiles. Keep your chin up - you are a very strong woman and i know you can navigate these hurdles that have appeared in your lives.