2/25 10:00 pm

Ethan had two very brief episode with nausea. This is great news!  It does seem to coincide with when medications are due or his feeds.

When I woke up this morning, our room was different. I looked around and realized Janice was no where to be found which meant she quit overnight again not fulfilling her 3 day obligation of dialysis. Today is a rest day from dialysis. We will see what Ethan can do. Will he blow up with fluid? Will he make any urine?

As I spoke with renal, I coordinated the HD to start after Ethan’s PT session tomorrow. I didn’t want him missing out on the motion.

Today PT/OT had Ethan up and walking. He looks so tall when he stands. I swear he grew. He walked around the unit, slowly and carefully, trying to work on his balance and where his feet were. He is unable to walk unassisted. But he tries so hard. 

Now that he is off dialysis we have gone from 3 glorious thick blankets, to “I am hotter than the surface of the sun and need two fans”. He has ice packs all over him and is just sweltering. Apparently this is a thing with heart kids.

The next thing on our list was to get a caloriemtry which measures Ethan’s resting metabolic rate. It is a mask that goes over his face to measure the energy exchange while he is breathing. They take the data and enter it into a formula to see what his resting caloric needs are. Then they may or may not be able to adjust his caloric intake of formula/fluids. He had to have a tight mask over his face with a contraption on it and hooked up to a machine. It was determined Ethan needs 1600 calories at rest and 2700 when active. His feeds off him about 1300 calories so he has to take in 1400 on his own.

Because Ethan is in kidney failure and having to get dialysis, his fluid in take has been restricted to 500 ml’s again today. It’s roughly 16 oz and some of that is subtracted for medications he gets. He is dying and just wants to have some nice cold ice water.

I am trying to lobby to get him more fluids as it has been argued a few times that liquids are things like ice cream, and apple sauce. What? 

How can he eat more calories when everything he eats is considered a liquid? 

I decided to get him some custard. Pudding is not considered a liquid. So neither is custard.  The custard happened to be frozen with chocolate sauce and sprinkles on it. He ate it all. Other than that, we have been quite strict with the liquid intake.  From what I am told, the kidney diet is even worse than the restricting salt diet.

Ethan played his farming game. And napped throughout the afternoon.

I keep thinking to myself geez....when is this kid going to catch a break. How much can one kid take.  As the thoughts come into my mind I see Ethan blazing his own trail to recovery.

Once stable on HD we can move down to the 6 th floor where each room has its own bathroom. Wow! Can’t wait. It also has more patients per nurse workload. Less attention, which more things fall on my shoulders. It’s ok they are broad.

We had a visitor today and he is one of the favorites. How many favorites is too many? There are a lot of favorites.

Tomorrow holds the key to our date. Ethan has been off dialysis for almost 24 hours. There has been no attempt to pee. Oh well.

My bright spot was when I went down to visit 9 tower. I got to see a few regulars. They are fun people.