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Sunday, January 24, 2010

Extraordinary Measures

This was an extremely frustrating week and to top it off I was battling a bladder or kidney infection and dealing with Oklahoma Health Care Authority to cover our appointment on Thursday to see Dr. Dan in Columbia, MO. Where we are at now unless there is miracle and the paperwork makes it through the process and I do believe in miracles, I will be paying out of pocket for this doctor appointment & X-rays. This is frustrating to me because of all the red tape that has to go in to getting something approved and without one little piece of the puzzle, J's paperwork sits. I feel very passionately about seeing Dr. Dan. I have been praying GOD show me his plan, is this his way of saying this isn't the place if so I'll surrender but not until I know for sure. I have to keep pushing. It seems like sometimes everything has to be a fight. I have voiced earlier this isn't an elective surgery, years ago it would have been but with his curves being 85 degrees he is going to start suffering health problems, it's going to start affecting his organs, his heart, comprise his lungs they could collapse and it could affect kidney function.

I took off Friday afternoon and went to see the movie, "Extraordinary Measures" The movie was about a family who had 2 children with Pompe disease. Pompe is a metabolic disorder where they can't break down sugar so the body stores it, in the heart, kidneys causing them to get bigger. The life expectancy is 8-13 years. They didn't know if their child would come home from the hospital with major pneumonia, dad looked into his daughter's eyes and gained the strength to keep fighting. The physician they found who had studied Pompe Disease was close to finding a drug that could save their life, he had the theory but didn't have the motivation to get it where it needed to be in clinical. Dad walked out of his job one day to go to find this physician to meet with him, he couldn't get him on the phone. This dad at that meeting created The Pompe foundation and promised to raise $500,000 in a month. I love the conversation between the wife and husband when he came home. Dad, "I promised him we would raise $500 (little pause) thousand" she said is it $500 or a thousand and he said $500,000 and she said are you insane, his reply with the deer in the headlight look, "apparently". Then when they were ready for the research study, they were only going to do infants, so his children would not be a part. Dad lost it, he was desperate and running out of time with his daughter having more than a year and his son less than a year. He tried to steal some of the medicine, but was caught and the physician with the theory although they had their differences along the way but he understood the dad. They went above the VP head and got the children involved in a sibling study but because he went over their head they were furious and told him he blew any chance of his children every receiving the drug. This dad desperation once again not give up was writing a letter of apology, when they fired him. The VP only did this after the Physician who had the theory approached him in a shouting match. He lost his job but it was done so his children could be part of that sibling program. The ending when they did get the medicine, the children who were laughing hysterically they didn't understand but the physician who then called himself Uncle Bobby so he could be there, "said their body is breaking down the sugar this is a good thing" with tears in his eyes. The movie was personal to me, although Jeremy didn't have metabolic disorder the first year we were still checking for something metabollic. I know what it's like to sit in a physician office, be told bad news, this is what your son needs but these are the risk. I know what it's like to wonder if your child is going to snap out of this or is this going to be the illness that takes his life. Some wouldn't understand this dad's desperation through out the movie, but I understand it.

I had such a good time at our Women's retreat and so needed that. It was nice to get to visit with women from our church and hear their testimonies. I hated that I got sick on the way home but again feel it's a bladder or kidney infection. I almost went to an after hour clinic yesterday evening, but there is something about seeing your own physician. I woke up feeling better, felt a little better today but if it's not better tomorrow I will go see Dr. Martin.

Jeremy is going through some sort of clingy phase, he wants me to feed him, hold him and I don't feel good.

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