Friday, July 26, 2013

Update on Bryce - My Angel -

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Hello-
 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. 
video
 
 





 


Update On Bryce



Because 80% of babies diagnosed with Spinal Muscular Atrophy die from it before they turn 2, those in the medical profession act "almost like they're waiting for her to die," Amy said.  "I know that's a cruel thing to say, but she's not just a statistic.  She's a person.  She needs just as much of a full life as anybody else does."
http://www.our-sma-angels.com/lily/

The SMA community is a huge resource for me - strength, hope, support, and similar stories.

Lily's mom is right - this is exactly what happened during our June hospital stay. I have had to learn more about getting records and documentation to the providers. This is happening though and they are starting to review and have everything updated into his file at the hospital.
 
 


Since April, I began the AA diet, using low fat, low protein smoothies, a balanced set of food groups and supplements recommended for children with low muscle tone. Our home care providers delivered the prescribed Pediatric Vivonex to our home.  From May to June, Bryce recovered from his illness but we faced many challenges - on which has been his breathing. He had a great recovery and was doing much better-  There has been signs of decline over the past month. I hope he continues to gain strength.

 I still wonder which is better. High fat high protein such as the soy or the AA diet vivinex that I had him on.

video
Video taken this week