In the Name of Research
One trial prompts another for one brave girl and her family.
By Tom Karlya
March 2006 — Recently we heard from a local hospital that a clinical trial was under way. They asked if Kaitlyn wanted to participate and she agreed. Kaitlyn went into the hospital on a recent Monday and stayed until Wednesday. She had not been in the hospital, the same hospital I would like to add, since she was diagnosed in 1992. I was nervous. I figured the risk factor was probably about zero for anything to happen but still, my little girl going back into the hospital to take part in a trial that has to do with a disease she did not want anything to do with in the first place was a bit unnerving. Who would have ever thought that someone who has been through so much dealing with diabetes, would even remotely consider putting herself through any more pokes, pricks, sticks, or examinations than necessary. But that's Kaitlyn. I asked her why she decided to do it. She was non-assuming. She just stated that it seemed easy enough and it might help her as well as others. Sometimes in life we do things with faith. We do things with the feeling that everything will be okay. We trust.
We all arrived at the hospital on Monday night. With the amount of equipment needed for this trial, Kaitlyn would have her own room, which she would share with two machines that took up a good portion of half her room. Her roommates were technology. When we checked in, it was just past dinnertime in the hospital. They called down to have her meal sent up but it would take some time. She was now under the guidelines of the trial and although her diabetes would be treated first and the trial was second, the eye was always on the results of the trial.
While Kaitlyn was waiting for dinner, her number plummeted to 45 and she was given orange juice but ‘just enough' to get her through dinner. The doctor had to be called so the nurse would know what to do. But there was no way we would wait for a doctor's order. The nurse came back in and stated that Kaitlyn should suspend her insulin pump. It took 10 minutes to get a doctor's order to do something which we knew had to be done right away. Kaitlyn just stated okay. She had already done it 10 minutes before. No one was the wiser.
Tuesday morning they started by attempting to set one IV in each of Kaitlyn's arms. For most people this is not a problem. At least four times a year, Kaitlyn is tested for an A1C reading. Each time Kaitlyn goes in for a blood test, there is only one technician who can get it right and draw the blood correctly because her veins are just too hard to find. On this day we needed that same technician at the hospital.
They inserted a needle but it was the wrong place and it was useless. While still inserted in her, they moved it around trying to get it to work but it only caused pain. Again; again; again; again. Now tears were streaming down Kaitlyn's cheeks as the frustration and the pain just become unbearable. A pediatric doctor was bought in. Again and again and again they tried. Finally the researching doctor intervened. "This is unfair to her. Kaitlyn, we can end the trial here, this is just too much," he said. Kaitlyn responded, "I won't quit. I am not a quitter." Another doctor was bought in. Again; again and yet again. Each time some place different — each time a failed attempt. Another doctor suggested inserting the IV directly into her wrist — it would be painful but the best place. Finally that worked and the day of testing could begin.
After five hours, she was done for the day and she asked if the IV could be removed. They stated that it would have to stay in for tomorrow's test or they would have to start all over again. Kaitlyn pleaded to remove it and pointed out that now they knew what to do and it was very painful. For the entire day she remained with the IV inserted in her wrist. She was trying to keep her spirits up but she had bruises all over her arms and she was very, very tired.
Tuesday night she slept because she was just so exhausted. Her body had been through enough. The next day to her incredible amazement, the nurse came in and took out the IV to try someplace else. "Why didn't you listen to me yesterday and do that?" The nurse just smiled at her. They finished the final day of testing and we waited to take her home. She had had enough. Everyone was pleasant while we were there but I just kept thinking that pleasant doesn't cut it here. It should have been handled much differently.
I'm not saying anyone is to blame, but I'm saying everyone is to blame. They received the data they needed and five years from now no one will remember how the data was achieved, except us. It never gets easy for the parents or in this case, this very special patient. Kaitlyn could have quit. She could have stopped. But she knew that this was important. She persevered. Again she proved that she can roll with anything life has to throw at her. Again I could only stand by and watch as her diabetes dad.
dLife's Viewpoints columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences, most often at a set point in time. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team before acting on anything you read here to find out what will work best for you.
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