By: Dawn Thompson
The other day while we were in the Neurofibromatosis clinic, we learned about a new kind of dinosaur. I don’t really remember the name of the dinosaur but I do recall the nurse repeating it and saying she would never forget the name of it. What brought the subject up was the fact that the nurse had to go get a smaller cuff for Dylan in order to take his blood pressure. We were in the NF/Cancer center and most of the patients there are adults. She told the tale as she approached Dylan with the prehistoric, colorful “baby cuff.”
Dylan, being an 11-and-a-half-year-old pre-teen and all, was kind of making faces at the kiddie cuff. He realized that because of his small stature, the baby cuff was meant for him. The nurse could sense his awkwardness by the rolling of his eyes and the excessive use of his BIG man voice and mature conversation. In her attempt to distract Dylan, we got to learn about this funny named dinosaur. Her efforts were not all in vain though, it got him through the toughest part of the exam.
This doctor’s visit was a different one than he is used to. For the first time in a long time, it was a healthy visit! We had just gotten good results regarding his brain MRI and MRA. We had recently learned that Dylan had put on 10 pounds and grew nearly two inches since having his feeding tube placed in March. And best of all, Dylan was looking and feeling great.
We went home around dinner time that Friday and I reminded Dylan that we absolutely needed to change his Mickey button (feeding tube) that evening. Dylan grew very anxious, as it has been stinging him and bugging him the entire week. All the more reason we thought it was time for the change.
We put off changing it until his cousins came over later that night to visit. While they were there, Dylan thought he had mustered enough courage and said, “I will do it myself” Although it took him quite sometime to get it out of his stomach, he did it. The problem was getting the new one in. Dylan was very upset and wouldn’t let me help at all because it hurt. He finally gave me one good chance and the new button bent instead of going in. My sister realized we needed a water soluble lubricant but all we had was petroleum jelly and that wasn’t working.
Seeing the condition Dylan was in, we took him to the Emergency room. It was a race against the clock as the hole kept trying to close. There was a lot of granulation tissue which was complicating things. After about 20 minutes and multiple attempts, the new button finally went in. It was one of the worst experiences of both our lives, being able to see everything and having him being awake and alert through it of all. During the procedure, a nurse asked if I could come and distract Dylan. The reason I wasn’t there in the first place was that I don’t want my son to associate his mother with all that pain. I no longer him bring him comfort as he expects me to protect him from such things.
I couldn’t help but think of how I have no distractions anymore. I couldn’t even remember the name of the dinosaur we learned about earlier, never mind come up with a tale of my own. Within one minute of my trying to help, I ended up getting hurt. As Dylan’s procedure wound down, mine began with a quick triage, tetanus shot, an antibiotic and prescription for the road.
The next day we talked about what he went through and what happened to me. We talked about the medical staff side of things as well as the reason for immunizations. During a long ride home from visiting my mother, I bought the subject of communicable diseases up and how best to avoid getting them. After a few minutes of silence, he reached forward and touched my shoulder.
I kind of looked back and he said, “Now you have NF, hehe!”
I said, “Dylan, if I could take NF away from you and have it myself, I would do it in a heartbeat.”
He responded, “I wouldn’t let you Mumma, I would never want you to go through all the pain I have to have.”
Needless to say, I was deeply touched and also reminded of two VERY important things: I have a really AWESOME and gallant young man and secondly, we REALLY need to find a cure for Neurofibromatosis!
Best wishes to all the other children affected by disorders, diseases, illnesses and ailments. If I am ever half as brave as the youngest of these kids, it would be a triumph.