Medicine, Mishaps and Miracles

     When my son Brett was born he was examined by a pediatrician like all newborns are. The doctor who examined him told us that Brett had a bald spot on his head, an area on his head called a nevus sebaceous. http://www.sebaceous.com/nevus-sebaceous/ We were fortunate that the doctor examining Brett happened to have a daughter born with this same problem because he knew instantly what it was, even though it is very uncommon and most doctors have never heard of it. He told us it was a spot composed of only oil glands and no hair follicles so Brett would have a spot on his head that would never grow hair. That didn't sound too bad for a boy. I figured there were a lot worse things to be diagnosed with. Then he told us that when a child with this condition goes through adolescence these spots change and there is a high likelihood of tumors and cancers that grow on these spots. He advised us not to worry about it until he got older unless we saw a change in that spot on his head.

     So he went through childhood with a bald spot on his head that you couldn't even see when his hair got a little longer but it was noticeable after a haircut. It was on the top and back of his head so he didn't really think about it much unless someone asked him about it. Once someone asked him what happened to his head and he said, “My Dad gave me a haircut”, not realizing they were asking about his bald spot. They started laughing and suggested he shouldn't trust his Dad to cut his hair.

    So life went on for him with his soccer games, scouts, school and other events. Then adolescence came and just as the doctor predicted a tumor grew on his bald spot. We took him to a specialist and he removed the tumor in January of 2000. The specialist advised us that Brett should have his bald spot removed because other tumors would most likely grow there and the potential for cancer was high. After he had his tumor removed, he had a lot of gauze on it for the bleeding so his older brother would bring his friends home and tell them that Brett had been shot in the head. Kids have a way of making hard to explain things sound cool. We had no idea how bad the next phase was going to be for Brett. (Note: sorry that some of these pictures aren't very pretty)

His tumor was removed from his bald spot

     We waited for his head to heal and then a surgery was scheduled in April. This surgery started out with a 3 inch cut and then 2 hours were spent cauterizing blood vessels and a tissue expander was inserted into his head under the skin and he was sewed back up. There was also a port that looked like a bump in his neck where fluids could be put into the bag through a shot needle twice a week. The purpose for this was to stretch out his skin so that spot on his head could be removed and there would be extra skin to close it up. Because the skin on your head is so tight you can't even pinch it, this was the only way to fix him up. Brett was very sick to his stomach and in a lot of pain after this surgery and his head swelled. He was in bed a few days and would hold his head and cry. It was hard to see him go through this. He got quite a few headaches after that but he suffered through it because he couldn't wait to get back out on the soccer field. 

Before surgery

After surgery and his smile is gone :(

A lot of people, including us, spoiled him after surgery

Around the bruising is where the port is, which hurt him

His stitches are removed

     Then his 8 weeks of injections started, so his skin could be stretched , his bald spot removed and the stretched skin pulled into place. He started his injections and one side of the back of his head kept getting bigger and bigger and more deformed looking. His friends all knew what was going on and even liked to feel the squishy pillow in his head. One day Brett and I were in the grocery store after his head had gotten pretty big. Since the bag was in the back of his head Brett couldn't see how bad it looked. He said to me, “I'm glad that people don't really notice that I have a bag in my head. Right after he said that, a group of girls walked past him and gave his head a double look and pulled faces. Brett missed their reaction. I guess ignorance is bliss. 

His deformed head from the injections

An escape to have some fun

    He still had four more injections to go when we decided to go on a vacation to South Dakota to see Mount Rushmore. We wanted to do something fun before he had his next surgery and he didn't feel good. We had planned a week of fun activities in South Dakota and everyone was excited. On our way there we stopped at a place called Evans Plunge, which is a natural hot spring where you can swim, slide, and do a lot of other fun things in the water. The 8 of us spent several hours playing in the water and having a blast together. 

I was gathering up the kids to get ready for us to leave when I glanced at Brett's head and noticed what looked like a shiny marble in his head in the sun. I looked closer and realized his head had split open showing a small spot of the exposed tissue expander. His skin had gotten so thin it just tore open in one spot the size of a dime. I was horrified. I wanted to turn around and go home. The rest of the family out-voted me. They all begged to continue our vacation and just keep a close eye on his head. They were so persistent that I reluctantly gave in, even though I knew I would be a nervous wreck the rest of our vacation. 

Having fun at Evans Plunge

The broken skin exposing his bag of fluid

   So we spent a few days exploring a lot cool caves, visiting a mammoth park, playing on Storybook Island, running through the Black Hills Maze, going to a Dinosaur Park, petting things at Reptile Gardens, seeing Mt. Rushmore, driving through Bear Country, eating chuck-wagon dinners while watching a western show, visiting Crazy Horse, blending in at the Flintstone Park and other cool places. I was watching Brett's head and it was getting gooey and crusty and I got very worried about infection. The kids would swim at the hotel pool in the evenings and soak in the hot tub and I wouldn't let Brett get in. I was the bad guy and Brett thought I was ruining his fun but I was too afraid with my wild kids all together splashing that the water from the hot tub would get splashed on his head and we all know how full of germs hot tubs are. I was just being a good mom. I had fun but I could not stop worrying. We cut our trip short by a few days and headed home. 

Fun at Reptile Gardens

We had fun in spite of the worries

Brett was pretty mad at me for not letting him in the hot tub. What a mean mom.

     I called the doctor as soon as we got home. I called and called all weekend, including their emergency number and I got no answer. The family teased me about the fact that we could have stayed on vacation longer. In desperation I called the hospital and they tracked down the doctor and had him call me. I found out the doctor's office phone system was being changed and the office number had gotten disconnected. Talk about bad luck. By this time the hole in his skin was draining green puss. I was very frustrated and I felt like our Heavenly Father wasn't looking out for us and Brett and not hearing our prayers for him. 

Getting infected

Soon he won't have such a big head ;)

     Then I was proven wrong with a series of miracles that had happened and would happen. First of all the doctor had accidentally given me 2 prescriptions instead of 1 of antibiotics for his upcoming surgery and I had a very strong feeling I should fill both prescriptions before we left on our trip. I also felt pressed to take a bottle with me, not knowing why I should do that. So I had an extra bottle to give him when we were out of town and when we came home and still couldn't get the doctor for the infection in his head. We poured our hearts out in prayer and Winn gave Brett a priesthood blessing. We then felt at peace, like everything would be OK and he would be fine waiting for our Monday doctor appointment. Brett's doctor was one of the very few doctors in the state who does this surgery, so that was another blessing.

     When I took Brett to his appointment on Monday, the doctor took one look at his head and told me he needed surgery ASAP. He took us into the office of the lady who sets the surgery appointments and he told her, “I know you hate it when I do this, but this boy needs surgery as soon as possible.” She told the doctor his schedule was full. I said a silent prayer sitting in her office and the phone rang. She picked it up, talked for a few minutes and then said, “You will never believe this but I just got a surgery cancellation. What are the odds of that?”

     So that Wednesday, on June 14^th, Brett had surgery. They took the bag out, took out the bald spot and sewed him back up. It took a few hours. When the doctor came out after surgery, he said, “Everything went perfect. We had the perfect amount of skin to work with, not too much or too little. It was as if God intervened and said that this boy is ready for surgery.” I got chills up my spine when he said that and I started to cry. It was one of those times I could see the good that comes out of something bad.

After surgery he was extremely miserable and sick

I bet this smile took a lot of work. I sure felt bad for him.

      We took Brett home later with a turban of bandages and a tube in his head draining extra fluid from his head. He had a rough recovery. He was sick from the anesthesia, throwing up and he was in a lot of pain. I stayed up all night with Brett his first night home. At one point he was throwing up really hard and tears were running down his face and he looked at me and said, “Mom, I have a lot to be thankful for”. He is a special boy with a close connection to God after all he has been through. That moment touched my heart and the vision of that night has never left me.

     When I took Brett to the doctor the next day, the doctor told me that a lot less fluid had drained from his head than normal, which is a really good thing and he was able to take the tube out of his head. From that point on Brett made a fast recovery and felt better than he had in months. It was good to get this ordeal behind us. I knew he was feeling better when the Sunday after his surgery he wanted badly to go to the airport. His grandparents had come to visit and they were going back home. Brett wanted to see if the 50 staples in his head would set off the metal detector. Brett has since told me many times that chicks dig scars. He has a lot of scars and been loved by plenty of chicks so far, so maybe he is right. I know I love him. He hated trying to explain his surgery so sometimes when his friends would ask him how he got such a big scar he would tell them that at scout camp the scouts were learning how to throw hatchets and one of the boys missed the target. Oh the boys and their stories. I have a lot more stories to tell about Brett. Life hasn't been an easy one for him. He is a walking miracle.

His friends thought all his staples were cool

With this scar he really could be mistaken for a pirate