Greetings to All:
ALL OF YOU HAVE AMAZED ME AND MY FAMILY! I OWE YOU MY LIFE FOR THE SUPPORT. Special gratitude and recognition needs to be given to the folks, founder and friends at South West Technologies for their super human efforts and attempting to work with the hospital specialists and pediatric staff.
Even as time was running out before major systems became toxic and started failing, so many of you came forward with alternatives, contacts, products, offers, ideas, suggestions, and just good old fashioned concern.
I LOVE ALL OF YOU AS I KNOW TALIA WOULD HAVE HAD SHE EVER MET ANY OF THE JWD PEOPLE.
Last night, at around 1AM, I passed out as many of Talia's cards and letters and we took turns reading them in the room. It was heartbreaking and sad and I fell apart so many times.
I spoke with my odest daughter and we conferenced with the medical staff, and we agreed to their suggestion of DNR order. I explained to Marina that it wasn't our decision, and it wasn't the hospital's decision. This would be Talia's decision and her body would let us know when she was tired and could not fight anymore.
It was very tough. Dr. Harrington has not lost a burn victim using VDR treatment in over 15 years and was sorely disappointed and emotional. Dr. Sorrells cried twice yesterday and was sorry we reached the final stages and ran out of treatment and no longer had any hope of survival or recovery.
She became pathological due to the amount of toxic gases still residing in her airways, lungs, bronchial chambers, cavities, etc. Also, the hard scabbing forming on the outside and on the inside of her lungs was severely hampering the efforts to oscillate, ventilate and make her lungs release the toxic gases stuck in the air sacs and fat cells.
We could never have known in advance how bad the gases were at the outset and it did take time to reveal the extent of the lung damage. The staff gave ot their all and tried their best. I only wish they had considered the Elasto-Gel several weeks ago and then decided to use the heart & lung machine (ECMO) in Boston. We may have bought her more time.
I can ask a million questions and wonder for the rest of my life about this tragedy. The biggest hole in my life will be the absence of Talia, and not knowing ever what really happened those last few minutes in that bedroom.
I will post some pictures with a pseudo-obituary in a few days when it is all completed. Again, thank you all for the marvelous outreach. As soon as possible, I will have cards & letters mailed out to all of you. I wanted to know so many of you in person and hope someday I will have the chance.
Accept my love, my gratitude, my admiration, my respect and most of all my loyalty.
Sincerely,
MJB
