Bryan was given an assignment to write a paper detailing something he has overcome. Just thinking about his story makes me lose my breath. So I thought I would take a moment and write my version as Bryan's mom.
As an infant Bryan had several issues that were very alarming to a first time mom. Everything from projectile vomiting (like exorcist style) to throwing up blood. The crazy thing is his pediatrician at the time just thought I was an over protective new mom. Which of course was true, I had no idea what I was doing and I took everything that doctor told me as fact. The doctor said he had to eat every 4 hours so he ate every 4 hours, waking him up in the middle of the night even. The doctor said no taking him in public, no letting others kiss him and a lot of other demands that our family and friends thought were crazy. It's ironic that the same doctor that gave me all of these rules dismissed the issues going on with Bryan. Bryan seemed sick a lot but I was always told it was just a viral infection. After he threw up blood for the 2nd time and the doctor was STILL saying it's just a viral infection I wised up and switched doctors. In his very first appointment we learned he had an immune deficiency and needed some breathing treatments. Adding the breathing treatments and vitamins helped him immensely and for the first time he was without any issues.
Fast forward to preschool. Bryan was very athletic and outgoing. He did soccer and baseball. He went to preschool and loved it. About this time he started complaining every once and awhile that he felt kind of weak. It was maybe 4-5 times a year. It was always very "convenient" timing....like he was playing and running around fine but now that it's time to clean his room he felt weak. So I just kind of shrugged it off as not wanting to do chores.
He began kindergarten and was doing really well, continuing to play sports and be active in school. Again every once and awhile he would feel weak. He didn't really have the vocabulary to articulate how he was feeling. We just assumed he was overtired or had a cold. Then came March 2008, we were getting them ready to go to the grandparents for the weekend. He looked a little off but wanted to go. When we got to Joplin he got in the car with his grandpa to go pick up some food. When they got to the restaurant Bryan couldn't get out of the car. He couldn't get up. We took him to urgent care. Urgent care immediately sent us to the ER where they admitted him. They checked his levels and his cpk was over 19000 and for his size it should have been under 100. They did a ton of tests but nothing came back. After several days in the hospital his levels began to drop slowly. The doctor he had in the hospital would become one of our greatest allies. So after 5 days in the hospital his levels had lowered but still weren't normal. However he was able to get up and move around. They assumed he had some kind of infection and let him go home. We continued to have to have his blood work checked every week. For 7 months he had blood draws every week. His doctor kept researching but his levels were slowly going down so she said as long as he kept improving we were ok. Finally 7 months later his blood work came back to normal range. However Bryan continued to have boughts of weakness. His doctor started conferring with specialists at Children's Mercy. It was decided Bryan really needed to be seen by a specialist there. Every time we went to Children's there were different tests and they were sure they had a diagnosis and every time it came back negative. During this time we really saw Bryan's health start to deteriorate. He went from being the best kid of the sports team to the kid the coach was scared to play. After over a year and a half of tests it was decided he needed to have a muscle biopsy to confirm the diagnosis.
*I should mention during this time of uncertainty I was a complete mess. I did nothing but sit on the computer all day and research. If the house got clean it was because my husband did it. I was consumed with finding out what was wrong with my baby. They had told us many possibilities and many of those had him dying before he turned 30. I refused to accept that. I shut out the whole world, my friends, my family, my church. I gained 70 lbs during this time. My sole focus was finding out what was wrong with my baby.
Diagnosis: After so much time to have a diagnosis to KNOW what was going on no matter what it was was a blessing. I knew just knowing what we were dealing with would bring us comfort. I prayed it would be something that could be fixed with treatment or a surgery. I prayed whatever it was wouldn't affect his life expectancy and that he would be able to live a normal life. Diagnosis came and while I was sad it was something that couldn't be fixed, couldn't be healed I was thankful because while it was going to be difficult at least he would be alive! CPT2 deficiency was the diagnosis and as if that diagnosis wasn't rare enough Bryan appeared to have a mutated form. So they would have to wait and see how much it affected him. Even after having answers it was a struggle. The common cold made him weak. Strep throat or the flu landed him in the hospital for at least a week. He was unable to keep up on the sports field. He would be dragging his foot as he ran out on the field, he could barely swing a bat. I saw the light in him go out. He had always been such a confident kid and this took that from him. He missed 37 days of second grade from being in the hospital and unable to move. That's when we decided to give homeschool a try. I remember him coming up to me and saying "mom, I can't wait for heaven because then I can run and run and run and I'll never be weak". It crushed me. This was our lowest point.
Since then his doctors have found a good regimen for him. He has had less and less hospital stays and incidents. He knows how to manage so he doesn't overwhelm his body. He has been released to play any spot he wants. He is back in school and a very challenging school at that. He had lost his confidence but he has learned to gain confidence in who he is and not just his ability. The light in him has returned. He is doing absolutely amazing. There are still days when he feels weak and my heart sinks down to my stomach. But he is so so much better, so much happier and so much healthier. He has been an amazing, brave, incredible warrior through all of this. He has taught me so much and I am so very thankful to be his mom. As Bryan once said "God is going to use this for something amazing."
*I want to take a minute and thank a few people who helped me during this: Of course to my husband who saw my crazy and loved me through it, to our family who while they didn't quite understand what was going on they were always there. To my "girls" who put up with my absences, who loved me through it. To Becky, Bryan's school nurse who went above and beyond constantly for Bryan. Who put my mind at ease on a daily basis, thank you. To his teachers who made concessions for him, kept me informed and loved him through it. To Cyndi, Carolyn, Randi, Sylvia, Dawn, Arwen and Amber I know I would never have made it through this with out your prayers and support. A special shout out to my girl Angela who refused to let me stay in my funk, who made me get out of the house, who pointed out when I was be ridiculous and who loved me through it. To Marty and Rose for being momma bears for me and always being ready to make me laugh when I needed it. I am sure I missed people and I don't mean to. We were incredibly blessed by so many many people and I am very thankful for all of you.
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