A few mornings ago, while watching the news and getting Adam ready for his day...ABR, ABR and ABR...and a walk, reading and the movies, there was an interview with a Colorado family. Their two year old son was involved in a near-drowning in July. He was underwater for twenty minutes, given CPR and flown to a hospital where his body was kept cool using ice while in a medically induced coma. Except for the age of the child, this story was similar to Adam's. However,when Adam was life-flighted to a trauma center (twelve years earlier), they warmed his body and the outcome was that Adam was severely brain injured. Listening to the story with a lump in our throats, we are happy for the fully recovered little boy and sad for our young man. Doctors could give the family little assurance that the cooling of the body would work. Obviously, this procedure should be standard in cases of near-drowning. Wishing that "now" was "then", only takes us away from the present.
People have many misconceptions about the word "near-drowning." The severity of the injury depends upon the amount of time that the brain was deprived of oxygen, the age of the victim and his/her physical condition, temperature of the water, etc. Near-drowning does not mean that the person did not drown and that they are fine. Since Adam's accident, we have seen few near-drowning survivors, though we have seen many brain-injured children and young adults. People often ask if Adam has cerebral palsy because he has contractures at his elbows, wrists, ankles and knees. Basically, it comes down to a lack of oxygen to the brain and the part of the brain that is effected ( in Adam's case, the basal ganglia), This lack of oxygen often results in a collapse of the musculoskeletal system. We have discovered that the therapy ABR (Advanced Biomechanical Rehabilitation) addresses this specific issue. The inventor, Leonid Blyum, refers to ABR as the back door to addressing the structural effects of a brain injury...volume, mobility and then function.
Wow! What a tough interview for you to watch! My husband saw a show about the cooling method as well and we thought of Adam. Last summer when Christopher started biting his lip non stop his PT at school had a friend that watched Mysterious Diagnosis on On Demand. (It is still on if you want to watch). There is a show called The Boy Who Bit Himself. She called us right away and told me to watch the show. I watched and did some research and called his Neurologist the next day and ordered the blood work ASAP. The Dr.told me that he did not think he had Lesch Nyhan. That is was too rare. I insisted on the test and it was positive. This diagnosis was devastating to say the least. I was sick for a week. Our law suit was up two weeks after the diagnosis. We had to drop the suit we were going to win and worked so hard on for three years. I still think he has issues because of my birthing experience. However Lesch Nyhan mimics CP..lol What a tough blow that show and diagnosis was! I can relate. Tell marybeth we said hello as well as Adam! Keep posting!
ReplyDeleteOh, yes - I can relate...
ReplyDeleteSo sad to read about the near-drowning accident that happened to your son.
My boy nearly died during labor in 2005. Actually he died, he didn't have a heart beat when he got into this world.
The midwife failed to monitor his heart rate during the last stage of labor, so his extremely bad condition was totally unexpected. He was quickly resuscitated, and the diagnosis was birth asphyxia, lack of oxygen to the brain. The doctors use this term, but everybody else use the common term CP quad. Usually I tell people that he has CP due to lack of oxygen during birth. I think the extra explanation is important, because CP alone is too diffuse. It was a shocking accident that never should have happened.
A year after his birth, in 2006, I read about the cooling-down treatment. They knew about the treatment when my baby was born, but it was not a part of the hospital's procedure...well, it's a standard procedure today. You are not alone wishing that "now" was "then"...all wishful thinking can easily hurt, but I've accepted that the difficult thoughts and the grieve always will be a part of me. Luckily, we feel most of all blessed to have our son in our lives. He survived and fought for his life. So all we have to do, is fight with him - give him lots of love day & night!
Hugs from another mother (who lives in Norway) :-)
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