DONE

I don't feel like "done" is a strong enough word to describe how I feel at this point. I am no longer pushing for transplant because it's a convenience to us, I am pushing for transplant to save my son's life. Dialysis is not working anymore. I don't know what else to say to get everyone on board with the transplant.

We spent almost 5 hours at the hospital today. Max had labs drawn, a 300mL flush that only drained 150mL, an xray to check catheter placement, TPA dwell, another 300mL flush that drained 250mL and another TPA dose put into his catheter. Everyone thought that this was it. It was going to work. I, on the other hand, wasn't so confident. I was right. We got home and let Max have some time off of that God forsaken machine. After I woke up from my nap, we started the process of hooking him back up. The next 38 minutes of dwell time seemed like an eternity. My stomach was in my throat. Something was telling me that this was not going to go well. 7 minutes before he was suppose to drain, I told God that this was His time to gain my faith back. He didn't. Four alarms went by and we had to bypass the drain. Negative 56. Dwell two came and went. Alarm after alarm. Negative 152. I finally called the fellow on call and I have to say that I was not happy when I got off the phone with her. I felt like she was telling me that she didn't feel like dealing with it tonight. She told me to go ahead and end his therapy, give him a dose of Kayexalate and call them in the morning.

I hung up the phone, walked upstairs into Max's room and lost it. I sobbed over my sleeping little boy for a good 30 minutes before I went to the floor and sobbed for another 30 minutes. I am scared. This is not funny anymore. The game is over. It's time to move forward. Max's body is obviously telling us that it's done as well.

I feel that the only thing holding us back from transplanting is that it's not convenient for the surgeons. Well, it's not convenient for me either, but I do it. I do it because I have to. It's not convenient for me to stop everything I am doing so that I can hook my son up to a machine. A machine that keeps him alive for another day. It's not convenient for me to have to take him to have a needle shoved into his arm every month. It's not convenient for me to have to hand him over to the surgeons for the 13th time. It's not convenient to have to change his clothes 3 times a day because his g-tube is leaking or because we can't find a diaper that will cover his vesicostomy. Life is not convenient for me either, but I do it.

But for now, I am DONE.