39 Days

We are officially in the 30's as of 3 minutes ago. I have been getting asked a lot lately how I am doing with the surgery coming up and my first response is that I am very excited and that I can't wait. To be honest, I would be thrilled if the doctors decided that instead of taking a look at Max's dialysis catheter on Tuesday they would just transplant him. I will not be a happy mama if they have to replace this catheter when we are only 39 days from transplant. It's so frustrating that we are so close and now his catheter decides to stop working.

Have I mentioned how much I dislike dialysis? We have had a good run at it for the past two years, but I think Max's little body is telling us that it's ready for a new kidney. It's been a very long and bumpy journey, but I am not disappointed in the least bit to be finished with it. The day that I pack up the cycler to send it back will be a day to celebrate. It will be very tempting to not have a big ceremony on the Purple People Bridge as we drop that machine into the Ohio River. I don't think the insurance company would like that too much, but man would it feel good.

The past month has been the most exhausting month of my life. I don't function well anymore. I find myself wanting to do nothing but lay on the couch while Max plays on the floor beside me. I have a list of things I want to do before transplant, but don't have the energy to do any of it. We are trying very hard to get out and enjoy ourselves before we dive head first into what will be the craziest month of our lives, but it's hard. This is where I am going to get into the part where I say that I feel so bad for Max because he can't do what a typical 2 year old does. My 2 year old doesn't talk or walk. While everyone else is out enjoying their summer we are very limited because of Max's inability to get around. Max is stuck in a stroller because he doesn't have the strength to walk. He weighs 28 pounds, so it's not like we can hold him all the time. He doesn't know that he needs to hold on while we carry him, so we carry 28 pounds of dead weight. Needless to say, that only last a few minutes before our arms are shaking and we need to put him back into his stroller. It's not fair to Max. He gets so frustrated because of his limitations. You can tell that he wants to do it so badly, but can't. I want to take Max to the aquarium but they don't allow strollers. What kind of attraction doesn't allow strollers into their facility? There is no way in hell that we could carry him through the entire aquarium. He won't be able to do this for quite some time post transplant because of his immune system- or lack thereof.

So to answer your question, how am I doing with the surgery coming up? I am thrilled to be able to move on with our lives. I am finished with dialysis and dream about the day that it's all out of my house. I can't wait for Max to be able to live a "normal" life like all the other 2 year olds out there. I want to sleep through the night again. For everyone that says it's like having a newborn- it's worse. I can't pick up the cycler, feed it and rock it back to sleep. Nope, it just keeps yelling at me telling me that the little boy it's attached to isn't draining. Not only is the cycler beeping at me, the oxygen saturation monitor is beeping at me as well. It's actually beeping at this very moment because Max is laying in his bed gagging so badly that he can't keep his sats up at the minimum of 90%. Oh the sounds of End Stage Renal Disease.

Anyone want to trade me places for a day?

39 days...