2/15

I woke up to the noise of wretching this morning. I went from deep sleep to awake very quickly. Ethan was going through withdrawl. Withdrawl is no joke. He just wretches and yawns and spits. He is hot and cold at the same time. He worries that he may vomit all over the bed and make a mess. Poor kid.

Ethan is getting off his medications and apparently it takes several weeks of small weans to undo all the dependency the medications have caused.  It is also annoying because he knows he needs to eat, but who wants to eat when they are trying to vomit and can’t.

“I hate this.” He said this morning.  

“ I also hate this for you. You have worked so hard. No wonder people with drug addiction have such a hard time getting clean.” I told him.

Renal came by today and we discussed when Ethan will be switched over to HD dialysis. They said we still need to work on his fluid intake and if we do it too early it could backfire and then he would have to go back on Janice. They also were concerned about how low his blood pressure goes at night. They wanted to start him on a medication to increase his blood pressure which will allow a more efficient draw of fluid when he is hooked up to dialysis. As this plan was being presented to me, I became very skeptical.

“How can you put him on a medication that increases his blood pressure when he is being treated for severe pulmonary hypertension. (High blood pressure in his lungs) Does it bypass the lungs?” As I thought about it, it just didn’t make sense.

They stopped dead in their tracks. “we will have to look into that.”  This is why it is so important to have one person for continuity of care at the bedside. I feel lucky to be that person. An advocate to help with these details. It is so easy to see how so many hands in the pot can miss something.

It was then brought up during rounds and I posed the question again. “I don’t want him on this medication until I know it won’t interfere with his pulmonary hypertension.” They will also look into it. I also didn’t want to switch until they knew this was going to work. Ethan has worked too hard to have any more set backs. Plus we are working with one lonely kidney. I don’t want it injured again. Let it ease into its work load.

Janice came down today. It was her day to be turned off. This means Ethan has a day of freedom. We got him into the chair. He actually sat up in bed by himself with no one helping him. WOW! 

He did most of the work standing up and pivoting to the chair. He still has trouble with what he is supposed to do with his hips and feet to stand.

Once in the chair, I worked him. He did marching, he did modified squats with resistance. He worked his arms and his neck and shoulders. I also had him do core training. He napped as well. 

His nurse and I busted him free and we ventured down to the lobby and outside into the courtyard. It was a bit chilly but I told him to breath in the fresh air deep into his lungs. We were out long enough to blow the stench of the ICU off of him.

We also went for a ride around the unit. Up and down the hall. All the nurses were saying hi to him. Also, we determined I am a wreck less wheelchair driver. Truth be told it was sort of on purpose just to keep him on his toes. The nurse started making fun of me (in a fun way) and told Ethan to get his mom under control.

“She is not controlled by anyone.” He said and he is not wrong.

Ethan also got a shave and slight haircut. I cleaned up the mullet in the back a little and around his ears.

Ethan did some more PT and ate a hearty dinner. He knows that we will stay in ICU until about a week or so after going on to HD dialysis. This will be a bitter sweet day when we leave all of our new friends here. Our cheerleaders, our friendly faces (well just the eyes and forehead) and the people that saved Ethan’s life....TWICE! But it will be one step closer to home.

Janice goes back up tonight and Ethan will be tethered to the room again for 3 more days.....unless she accidentally gets taken down sooner for physical therapy purposes..... which is a fun little trick the team likes to play on the renal team. We shall see.....