3/8

We had a good chat with the kidney doctors today as we explored the possibility of getting a fistula. This would be another surgery. A fistula is when a vascular surgeon take a vein and artery in an arm and meshes them together to make one large vessel. This will allow for easier access for dialysis moving forward. It will be a big soft blob on his arm. It will be a bit unsightly and non reversible. It also will allow Ethan to have his vas cath removed which has a chance for infection. His vas cath is what they use currently for dialysis. I did some thinking, and he could make up a wild story about his arm vein. For instance, he could tell people he traveled and picked up a parasite or he is infested with subcuticular snakes.

There is more of a focus on kidney transplant. His kidney function isn’t really improving too much. We still have time for his kidney to wake up but with each passing day, the likelihood is less and less.

I brought up the fact that he has a life he wants to live and dialysis is going to get in the way. I had heard someone mentioning that there are some dialysis devices that can be done from home. I pushed this issue as it would offer the most normalcy for Ethan. How could he go to school or work going to dialysis 3-4 times a week for 4 hours each session? Apparently the at home dialysis is achievable with a fistula but I would need to take a course. I can handle that.

Ethan made it through dialysis only to be tasked with physical therapy. This is a risky move as dialysis filters out the toxins as well as energy of Ethan’s body. After dialysis, PT car guy came and asked if Ethan was ready. Ethan told him he was ready to “kick some ass” blowing PT car guy away with his enthusiasm and energy. Ethan walked around the square of the floor one time with the walker. He was forced to stop for the infectious disease team to come in like he hasarare form of a plague-Ebola hybrid disease that will wipe out all of mankind or something and poke him with a stick a few times. This was because of his vomiting and fever incident over the weekend.

After the quick infectious disease intermission Ethan stated that he wanted to try and walk without his Walker.  PT car guy obliged and there Ethan was, strutting cautiously down the hall. Wow!  He is now a hands free device!!!!!

After PT we had a whirlwind of appointments with people in our room. Once dinner came, Ethan just wanted to have dinner together. He thanked me for being “the best mom ever”. Of course he earned some awesome brown-noser points. I loved every second of it. It was very heartwarming. It did tug at my heart strings.

Around 10 pm he was taken down stairs for a brain MRI. Just checking the stroke area. His left arm is weaker than the right and his hand has less function. His smile is a little affected. His left leg and foot seems to have gained strength and is working pretty well.

Tomorrow we will find out more about the fistula surgery. Ethan made 15 ml of urine today! 

The next “boot in the ass” for Ethan will be to start on some school work. He is still on sedatives but I think he can pull off something. I will gently nudge him to dedicate some time towards it. 

One of my most favorite things that was said today “Ethan looks more like a teen today than he does a patient.”  Think about how powerful that statement is.