2/27 9:15 pm

Fran arrived at 7:45 am. It was a different machine and a slight bit more compact than the Fran yesterdaybut made about the same amount of noise. Ethan woke up briefly but took a nap through all 3 hours of dialysis. 

Ethan’s thyroid results came back that he has a low thyroid again. The endocrine team does not want to start hypothyroid medication just quite yet. This was discussed last week as seriously ill patients can have this issue and the thyroid is just going into a protective mode. So we will continue to monitor his thyroid level as we go.

Ethan will also have an ACTH stim test next week. This will measure Ethan’s ability to produce cortisol. Cortisol is the body’s stress hormone. It triggers your brain to let you know when to have the “flight or fight” response in a stressful situation. It controls your mood, motivation and fear. It’s pretty important as it also plays a role in blood pressure regulation, controls your sleep/wake cycle , how your body utilizes carbohydrates and allows your body to handle stress. Ethan’s blood glucose has been elevated for several weeks (not terribly high) and both issues are related to prolonged use of steroids if I understood correctly.

If Ethan has a thyroid issue, we will deal with it. It will suck but I am just so grateful we got to this point. I daily think back to December 17 th. I probably relive that day more often than I care to admit. I remember the sounds in the room. I remember the smell. I remember the pin point pupils and dead eyes during his cardiac arrest. He has so much to do and I am glad he didn’t leave that day.

HD was a success. We were able to pull off 1.2 liters today. Three times the amount as yesterday.  The goal is to pull off one liter an hour for a total of 3 liters a session. So even though they got a lot of fluid off, some was left behind and now Ethan has been restricted to no fluids by mouth until Monday.  He has too much fluid in his system that his kidney can’t filter or remove. We can’t add any more than necessary. He even is taking his pills with yogurt instead of water to help.

Ethan was frustrated by this. When the renal doctor came in to let us know about the zero fluids until Monday, Ethan was curious if this was going to be how his life is from now on and what if he doesn’t get better.

Ethan’s nephrologist explained to him that he had an acute kidney injury. It will be be considered acute until the three month mark. If they remain “acute” injuries they heal within that time frame. Once the three month mark passes, he is considered to have chronic kidney disease. He would remain on dialysis until he can be well enough for a kidney transplant. (Are you flipping kidding me?) You can imagine that this took the wind right out of his sails.

“I don’t want another transplant.” He said. His eyes were wide and scared. “I don’t want you too either.” I had already decided that he could have one of mine if he needs one as we have the same blood type. He also has an “in” at the hospital because his nephrologist also runs the kidney transplant program. I even went one step further and made sure I met all the criteria for being his donor.

He then became nauseous and was wretching. Icing on the cake. It was short lived so that was good.

We talked about how it is unproductive to worry about this now. One of the things I have learned here was the term “reframe it”. Anything can be reframed so that you can find the bright side. Ethan might need a kidney transplant.  If I reframe it, Ethan is still here and just may end up needing a kidney transplant. He also may not need one. There are so many things that could change and steer his path along the way into a different direction. We decided to remove this worry from our plate. We discussed how the worry won’t help or change anything. It will actually get in the way of sleeping and more of our short term goals. We need to focus and celebrate the wins. It still is not a definite and we have 4 weeks and 5 days left to get this kidney jump started. Come on kidney...wake up. Don’t be a free loader.

Now we have a choice. To wallow in our own self pity. “Woah is me” or the alternative of playing PlayStation. So Ethan chose to not only play the PlayStation but to do it on the couch. He wanted to sit with me on the couch. His nurse made it happen. So we sat together as he played. Wow!  Today was the first time he has sat on a couch since November. That is a win!

The GI doctor came and visited with Ethan. She said that often when people suffer from being critically ill for a long time, all of their blood goes to the vital organs and skips over the less important organs.  They think Ethan’s motility, or ability to push food through has slowed down because he was so sick. The solution to combat his nausea is to feed him small frequent feeds in his feeding tube and then let his gut rest. We will see how that effects his nausea.

Ethan was able to walk from the couch to the bed assisted. Another win and bright side for today. 

We had a lot of news today. All we can do is live one day at a time and work on the things we can control. We are letting the other things go for now.  If we didn’t, our fears of the unknown would have crippling grip on us and inhibit our “in the moment” lives.