Tommy's Story

By Jami Hoffman-Perron

Tell us your story.

Tommy went to his 5th day of 1st grade at Minter Creek Elementary school on 9-9-05 just like every other kid. Tommy was a normal, healthy kid up until that point. Tommy had a seizure at school and was taken to Mary Bridge Children's Hospital in Tacoma, WA which started a 2 week stay there and a transfer to Children's Hospital in Seattle, WA. Within a 2 week period Tommy lost the ability to eat, drink, walk, talk, and use his hands. Doctors ran numerous tests on Tommy. No answers were to be found. No meds could stop his seizures and he ended up in status epilepticus. That was when we transferred to Children's. He was admitted to the PICU and put into a medicated coma for 10 days. During which Tommy stopped breathing a few times and doctors were unsure he would live through the week. He did make it and after coming out of the coma his seizures stopped but nothing else improved. We spent another month in the hospital with no improvement. Tommy was on numeruos meds for seizures and anxiety and his dopamine levels were low. We brought Tommy home from Childrens in November of 2005 and lived every day with the heartache of missing our son. All we had was a little boy who slept most of the time and when he was awake he just sat around and stared. He couldn't communicate with us. We tried to treat him as normal as possible but I don't know how much of that helped. Then one day as quickly as the illness came started going away. It was much like a baby learning. He crawled, then climbed, then started using his hands, then walked with furniture and help, then finally on Easter day of 2006 our Tommy took his first steps in 7 months. It still brings tears to my eyes to tell this story. Within 2 weeks most of his functions came back. Within 1 month he was re-potty trained, talking fully, eating fully, and learning to walk steadily. Tommy's story is such a long detailed one, that it takes more than this short area to tell it.

What does Children's mean to you, your child and your family?

Children's really did a great job of making us feel welcome. They supplied us with a place for our Motorhome to park since we were 2 miles short to qualify for the Ronald McDonald house. They gave us grocery gift cards to buy groceries to stock our motorhome so we would have food when our then 4 year old would come stay with us on the weekends. She was living with my parents and would come up on the weekends. The nurses and volunteers were so good to our daughter. During our stay we celebrated Halloween at the hospital. They threw a party and included our daughter as well as our sick son. They gave them gifts and treats and attention. They made them feel special. The social workers brought my daughter treats and toys and gave us tickets to get out of the hospital and take her somewhere. I can't tell you what that meant for us. We needed to spend time with her and have a little normalcy. It was hard to live day in and day out in a hospital room not knowing if this was the last day you would see your child alive or not. But you know after 2 months of living in a hospital it starts to feel like a home. A weird home, but a home, nonetheless. We had laundry facilities, a bed to sleep in with our son, people there around the clock to meet not only our son's needs but ours as well. To this day when we go for clinic appointments, we still run into our "hospital famliy". The day we left the hospital to bring Tommy home, the nurses cried and hugged us. Tommy's was such a rare medical case and he suffered so much that the nurses and doctors really became attached to him. When our son walked into Children's hospital 8 months after his illness started for his first clinic visit after recovery we went to say "Hi" to our favorites and we were greeted with hugs, tears, and joy. I can't tell you what some of the doctors and nurses at Children's mean to our family. They saved our son's life.