3/22

Calorie counts, counting ounces of fluid, keeping track of all his beads he has earned. This is with trying to juggle all of his different specialists, school, and other things. We are supposed to leave on Thursday. I told them if we don’t leave on Thursday I might have a mental breakdown.

Ethan had dialysis first thing this morning. Dialysis is hard first thing in the morning. As it is removing the toxins from the body it also sucks the energy away. 

We had rounds. They talked about leaving the heparin drip on for another day. Ugh! I hated that. I advocated to have it shut off today. I used the info they gave me the other day as criteria for why they should remove the iv. They had met the criteria they had set forth a few days ago so I didn’t understand and questioned it. 

After reviewing their notes, during dialysis they shut off his heparin drip. He’s free. His leash is off. Woo hoo! I did mention to him yesterday that he was like walking one of the dogs. Except he was far more behaved on a leash.

Also during rounds I pushed to have a visit with the nutritionist. I knew that even though Ethan didn’t meet his nutrition goals a few days last week and over the weekend, but it was due to the missed methadone dose. Withdrawl was the driving force. Now that he is over that, he is eating better. I wanted to push to get the feeding tube out. 

After meeting with the nutritionist it was decided that he could meet his desired calorie intake. We could go ahead and remove the feeding tube. Yahoo! Don’t let the door boot you on the ass, feeding tube.

Ethan was immediately nervous. He was scared it was going to hurt. His nurse told him it would not be comfortable but after all he has been through, it would be on the low end of the pain scale. He had gotten his iv drip shut off, this is the next big step!

The nurse snapped on her purple rubber gloves and walked over to him. He was nervous and didn’t want to feel pain. That is a legitimate fear. She slowly removed the tape and started pulling on this tube that has been married to Ethan’s nasal passages and stomach since the beginning of December. It had been deemed the longest lasting NG tube she has ever seen. It leaked and we had to rubber and it so that it wouldn’t drip his feeds and gastric acid all over.

As the nurse pulled on the tube, it was like watching a clown car. More and more tubing came out. Where was it all kept? I thought I may have been pranked, it just seemed so long. What lasted about 20 seconds of pulling seem to last for minutes. Holy crap! Ethan has just proven again to me how much he kicks ass. He is so strong! We made a few inappropriate jokes (shocking) about the length of the tube and threw it out.

Wow!  And there is Ethan’s beautiful, tubeless face. It has been a long several months without seeing it. We gave him a shave and he proceeded to urinate 40 ml right after dialysis. How is that for kicking hell in the balls? 

Ethan had PT/OT show up and he was a trooper. We went outside and he walked all around the courtyard with the sunshine shining warmly on us. Ethan did stairs, he walked on grass and up inclines. He was tired. 

A combination of his exercise, anemia and dialysis wiped him out and he took a couple hours long nap.  He missed lunch and needed to make up the calories for dinner. He had a hearty meal and then snacked all evening.

Today was a bright side. The whole day. It was nice to have such a nice day.