This history is taking longer than expected. I am now up to April 2010. The first appointment in March with the orthopedist at Gillette was kind of devastating. He didn't know what it was for sure but suggested it could be a syndrome related to nurofibromatosis. In April we went to the neurologist. Our family Dr had already wanted a developmental assessment because of Little guy's language delay and his brothers autism. I mentioned to the neurologist that Sam was experiencing headaches about 3-4 times a month that take him out. We were sent for an MRI of the brain. I think everything else was OK. Come to think of it I should check back and make sure he was cleared far as any other delays.
The MRI was the beginning of May. It went OK. Sam had fun with this cool wall toy with all sorts of gears and springs to bounce these balls around. We met with the neurologist the next day for the results. Sam had three unknown spots in his skull bones and a chiari 1 malformation. the spots are related to the lesions found in his legs. The chiari is when the cerebellum tonsils slip down into the spinal cavity. She said the headaches were not related to the chiari but I really feel they are. Later in May we met with the geneticist. She is a real through doctor and took a detailed history of Little Guy and our family. Looked Sam over head to toe, even took a black light and looked him over for cafe-au-laught spots. She ordered gene studies and fragile X tests and a complete bone survey. that is 26 x-rays that cover head to toe. More lesions were found in his hip too.
Friday June 4 everything changed. We were trying to watch a movie but the blue-ray player was not working and most the kids went outside. Sam found a cookie left over from snack and was kind of walking in circles in the living room eating it. I was starting dinner. He tripped over a blanket on the floor the kids had used to get comfy for the movie. He broke his right femur. Right near the top of the bone, proximal I believe it is called. His leg was deformed and sticking out to the right. I didn't think I could get him in the car safely or comfortably so I called an ambulance. Richard met us at Regions Hospital. Sam was made comfortable for the night and Saturday morning he was taken in for a closed reduction and spica cast application. He under went general anesthesia the Dr and a resident moved his leg to get it back in place and casted it. A spica cast goes from the chest down to the toe of the broken leg and knee of the other leg. The Dr couldn't line it up perfectly and there was a little bit of overlap of the broken ends of the bone.
On Monday the Dr met with the orthopedist we saw in March and talked to a bone tumor specialist at the U of MN and it was decided to operate put a plate on the break and get a sample of bone for analysis. Trying to find time for the to doctors to get into the OR was a challenge and we had to wait until late Wed afternoon. I have come to the feeling that medicine at this level is as much art as it is science. The doctors were not sure how to proceed with Sam and had to take their best guesses. An adult humerus plate was put on his femur. There was another lesion further down the femur that made things a little difficult because the bone was misshapen at that point so the plate could not cover it.
He came through surgery OK and did well that night. I think he still had some epidural from the surgery to help with pain. Thursday was a rough day and he had a lot of pain. When the night shift of nurses came on they came up with a good medicine routine and gave Little Guy something every two hours through the night. When he woke up Friday morning Little Guy was in such a better place and asked for a toy to play with. We got to go home that afternoon. It was so sweet to see all the kids together and loving on each other. Sam 's mood improved so much coming home. I think after seven days in the hospital he felt like he wasn't coming home and was so glad to get home. The biopsy came back showing inflammation so we assumed it was Chronic recurring Multifocal Osteomyletis and started indocin for it.
No comments:
Post a Comment