Being your child's advocate

The post below explains his catheter situation, but I learned something from it. My mother-in-law noticed that he was uncomfortable with his leg a certain way. We assumed it was due to the catheter and/or tape from it. Not thinking anything of it, we left it. A few hours later we realized how infected and sore it was.

Later that night, Matthew was still awake. It was past midnight..in the 1 o'clock hour. He hadn't slept much. But, who would with their catheter screwed up, right? At this point, his cath was out, but I'm sure he was still uncomfortable. Well, he had a seizure. I buzzed the RN and we were with him during the seizure. It was a "medium" seizure for Matthew. He had more severe ones earlier that day and the RN received an order for Adivan for that 1 seizure. Knowing this, the night RN talked to the doctor on the floor and got an order for Diazapam (AKA Valium). She kept saying, "this will help stop the seizure and help him sleep". I told her once he fell asleep, he'd be fine and he was probably going to fall asleep soon. She still brought the med in and started hooking him up to monitors. I started to get a feeling we shouldn't take this med. She put the monitor on that measures his heart and respiration.

It had been about a half hour by now, she was almost ready to give him the med. He was sound asleep and not seizing anymore. I said something like, "I don't think he needs that, can we hold off". I felt guilty because she spent a half hour setting up, getting the medication and even had to have another RN come in to help with the monitor. She said we could hang onto it that way if he has another seizure we would have it near by. Oh, and while she was talking about the med, she kept saying, "This will help him sleep". That didn't sit right. If we want something to help him sleep, I'd prefer a more gentle medication....like Benadryl.

Matthew slept the WHOLE night. In fact, he pretty much slept for 24 hours straight. He'd wake up occasionally, but fall back to sleep within an hour. His new ACTH med was/is kicking his butt. Obviously he didn't need an intense medication to help him sleep.

Go with your gut. Who cares if you upset someone.