Saturday, January 22, 2011

Here We Go Round the Mulberry Bush

We were supposed to be discharged today. Then we weren't. Maybe tomorrow?

This afternoon, William just started slipping...he was tired, not cracking jokes or haranguing the nurses, and laying down. Not good signs for him in the early afternoon. So began this huge discussion with the nurses. What to do. We hooked him back up to the fluids, but that was not gonna be enough. Finally, it hit me. If he is in an energy crisis, then he needs dextrose. Increase the rate of his fluids.

So, we doubled the rate and we watched him return to life. It is amazing how it worked, but it is also points out how fragile he still is. Not the greatest news in the world.

So now we wait. Was the extra dextrose enough of a nudge for his system to actually start working properly again? Well, time will tell. He ate tonight, which is great news, he is sitting up and chatting, which is a good sign. Will it last? Tune in tomorrow for another episode of, "As Will's World Turns."

Friday, January 21, 2011

We've Been Here Before

I have contemplated many posts, but I have not actually sat down to type them out. Sitting at my desk at home to do more than pay bills and set up the next Cincinnati trip has just not been the priority. I miss the blog, but the kids really needed to see Mom. I am actually sitting here in the dark typing this post 'cause Will was admitted to MCV last night.

Will caught a cold about four days ago and required more than the typical number of infusions. Unfortunately, he contracted a stomach virus yesterday. He was mostly coping with the cold, but the stomach virus put him over the edge. By the time I got home, started an IV, packed a bag (cause there was little doubt he would be admitted), and got him to MCV, he basically was curled up in the fetal position. Dr. T had paved the way for us, so within minutes of arriving we were in a bed. It took a while to get the IV L-Carnitine started, but once it was on board, the improvement was astounding. While he is far from himself, he is vastly improved. We were admitted to the Progressive Care Unit (actually, the same room we were in two previous times!) which is a step down unit for the ICU.

It's an interesting emotion when you walk into a hospital and are greeted with, "Hey! We haven't seen you in a while!" and then your nurse walks in and says, "How are you? How was the surgery?" or another nurse from the adult side sees your name on the board and walks over to say hello. When they are getting ready to transfer you to the floor, the new nurse tells the ER nurse, "Let them know they are going to the same room as last time." Last time was two months ago, but she remembered. The Billy Joel song about wanting to be where everyone knows your name takes on a whole new perspective.

While being here is far from where I would like to be, it is comforting to know that I don't have to go through the whole teaching curve all over again. They know Will, they know what to look for, and they genuinely seem to care. It is tough to have a nurse say, "I went home to research what is wrong with your son so I could better care for him cause I knew he would be back," but the fact that they are willing to donate their personal time to better care for your child gives you a sense of comfort you don't otherwise have.

So here I sit, in the dark, watching Will finally sleep. They did not have his night meds, so he didn't fall asleep til after 4 am. How he is able to sleep at all in this place is always a mystery to me, because there are a lot of us in a big room with no walls and it is always noisy.

We are supposed to fly to Cincinnati on Sunday for an appointment, then trek to Toledo (about five hours from Cinci) for another doctor appointments. I have no idea if I should cancel that trip, so I am waiting for the doctors to make rounds. I have no idea how long we will be here...