3/15

 We had a typical Monday. I woke Ethan up to get him ready for school. He had his labs, EKG and then  attended class. After class he had OT. After that was cardiology, then renal, then the surgical team and psych. He of course urinated 30 ml. This kidney is a taunting jerk. I have extinguished all communication with the kidney as I feel it is dramatic and is attention seeking.

Ethan had dialysis in the afternoon while I entered the exciting world of SSI. That took up almost 2 hours and then I spent the rest of the time trying to get an appointment for a blood draw to see if I would be a good donor match if Ethan’s kidney doesn’t start working.  I spoke to a man that was really helpful. The kidney transplant clinic is two doors down so it won’t be bad to walk to. I finally got an appointment tomorrow afternoon. Then the waiting starts. 

The man explained that likely the wrong bloodwork was drawn last week (I had them send it off last week.) and that he needed a re-draw. I always try to condense Ethan’s blood draws to one poke a day.  He already had his poke for the day so I suggested the take the blood from his vas cath (or wait until the next morning) he wouldn’t even notice from the vas cath.

His vas cath isn’t small. It just hangs out of his body. We need to get rid of this thing.

This man wanted to speak with the dialysis nurse to let her know exactly the number of tubes and which tubes he needed drawn for the proper tests. I asked if maybe he wanted to speak with his regular nurse, trying to dance around the fact that the dialysis nurse didn’t speak English as her first language and there may be a bit of a language barrier. He insisted on speaking to the dialysis nurse.

It was a bit humerus. I had him on speaker phone.  He spoke quickly and spewed information about the tubes and tests he wanted to run. At the end, he asked “are you able to do that?” She answered with 3 words. “I dialysis nurse.” It was clear she had no understanding of what he was saying. 

He slowed down his speech and began talking louder to her...volume wasn’t the issue...but it is like when I am driving and looking for my next turn and I have to turn the radio down so you can see better. It makes no sense but somehow you think it helps.

 The dialysis nurse walked away with my phone.  She then just handed it to someone else and walked back to sit down outside of Ethan’s room. What a brilliant move. 

We finally got it all sorted out. They needed a courier to bring the bloodwork to the clinic for testing. I told the man that I would be the courier and bring the blood to my appointment tomorrow and hand deliver it. I sold him on that idea. Two big things crossed off my list of things to do. I was thankful that I was able to have so much help from the team to be able to expedite this process. Normally it takes a while to get an appointment. I was thankful that everyone steered me in the right direction.

Ethan is not listed for transplant and won’t be for quite some time. Of course if his kidney gets it’s head out of its butt, he won’t need to be listed.  But likely this will be the direction we go in, because this is Ethan.

The kidney has its own set of listing rules. Different from the heart. From what I am learning, as kids get better, kidneys can sometimes get better. With that being said, I rescheduled the fistula surgery for Wednesday. We don’t have a time, but it will be a busy day with surgery and dialysis. Tomorrow I will make sure that dialysis is scheduled on Wednesday around the surgery so both happen.

All the doctors agree that this is a great step towards quality of life for Ethan until either transplant or the kidney starts working. 

Apparently this is a non conventional timeline but everyone in onboard with us doing it. Normally I guess the fistula would be done after discharge and they Take a slower approach. This makes no sense to me.  They explained that people usually have to ease into the idea of transplant. Been there, done that.

Everyone has agreed that Ethan will benefit in the long run. My goal is to get him safely back to the things he loves without having to adapt to the dialysis life in the clinic for too long.

He’s not even worried about it. Tough kid.

He fell asleep during dinner and has only woken up with me shoving medications in his mouth. He was supposed to work on his homework butt that is not happening. Maybe tomorrow.

We will be heading to rehab next week. They don’t have a room for us yet. It is in New Jersey. It is called Children’s Specialized. Apparently they are really good.