3/10 9:55 pm

Ethan is proving to keep me up late. I don’t sleep well as I am woken up each time the nurse comes in to do vitals or medicate. I can’t wait to sleep in my own bed. The last couple of nights I haven’t gotten a proper allotment of sleep and I am starting to feel it emotionally and physically. I explained to him that I am old and want to go to bed at a reasonable time and after 9 pm (don’t judge me) is hard when I am not getting a full night of sleep and they wake me up early every morning.This is a work in progress and I am hoping he gives me a break.

We started the day with the news that dialysis wasn’t going to be at 5 pm like planned, it will be right in the middle of the day. That means we scramble a bit to make sure PT is scheduled around that. PT is one thing that Ethan needs so desperately.

We had PT outside today. Ethan walked in the sun with his walker. He then walked with assistance down and up the stairs. He walked on the green grass for the first time since last year. We saw flowers emerging. The sun was lifting our spirits. It is nice to be outside to shield us from the constant flow of people in and out of our room. It’s an introverts demise really.

Last night we had to stop and start our show so many times with all the interruptions. Our one hour show, took almost two hours to watch. It makes basic conversations, tasks and leisure activities harder and delayed.

Today at rounds they discussed that they got the results of Ethan’s MRI back. There was a blockage of a couple vessels in the area they suspected as well as some small calcification indicating some brain bleeding. These are all old injuries from the stroke. Again they were small areas not affecting much. They also found a proteinaceous cyst on the back of his pituitary gland. 

I didn’t even mention it to Ethan as I knew it would cause panic and worry. I didn’t have enough information to give him. During rounds, I was told neurology would come for a consult and go over the MRI results. 

I put it out of my brain and was focused on other things. Our nurse was told to bring us a release form to sign off on an MRI. When she brought me the form, I looked at her and said “he already had his MRI on Monday.”  I had no idea about the new development to explore the cyst. She replied with “This is to look at the growth on his pituitary gland.” Ethan’s head whipped over in our direction. His face went white. Panic, horror and terror washed over him. His eyes became glassed over. “I have a brain tumor?” The nurse felt terrible as she thought we had already been consulted with neurology. Ugh! What a nightmare.  That was fun to de-escalate.

The nurse and I tried to explain to him what this meant but we had little information which made it impossible. She apologized 1000 times. 

The team is sending him to MRI tonight, again, to explore that cyst. It isn’t very big, 0.9 cm x 1.3 cm. But still....no one wants a cyst in their kids brain.

On a funny note, as I filled out the paperwork for MRI, came across one of the questions.  I called the nurse over and asked her what a penile prosthesis was. She had no idea. So of course I had to Google it. Now who knows what sort of ads are going to show up for me.

A young doctor came in shortly thereafter to help explain the findings on the MRI but I still had questions he couldn’t answer. He said he would reach out to neurology and make sure they come to see us. They never came today. They just left us hanging.

The endocrine team also came in and wanted to start Ethan on thyroid medication. They suspect dialysis is filtering out all of his thyroid stimulating hormone and therefore his thyroid just isn’t working the way it should.

The surgical team arrive to evaluate and discuss Ethan’s surgery on his vein/artery for the fistula. He told us the surgery was set up for Friday. He went over all the risks and benefits blah blah blah. I felt good because if we are going to be discharged I want this stuff done before. The renal doctors were there too. I posed the question: “we still have time within the 3 months for Ethan’s kidney to start working. Is better to do know or wait?  What are the real chances this kidney is going to improve?”  He’s on medication that can affect the kidney and will be for life. If his kidney does start working, his forever heart rejection medication can be damaging to the kidney and there is nothing we can do about it. 

The answer I got was so much appreciated. I don’t want to make decisions on hope. I want to make decisions on fact. They talked me through that likely this kidney is screwed and transplant will be in our future. They said it more in a medical way. 

That got me thinking about creating an app that takes medical terms and translates them to laymen’s terms.  In my app, you could have several ways to receive your translation. Either written or spoken. If spoken you could get all of the different accents including southern because it is one of my favorites. You could also have the voice of Samuel L. Jackson. In this version of my make believe app the medical translator said “damn, his kidney is fu@ked.”

Boom. Let’s do the fistula. Problem solved. It takes several months (four typically if all goes well) to heal. I want it healed before summer so Ethan can swim and retain some teenage normalcy. This means like take a shower without ripping his skin off with the water protectant we have to apply to his current dialysis catheter.  Plus he would have restrictions with his current catheter that could get in the way of normal living.

So I tell Ethan about the surgery on his wrist because the “brain tumor” which is a cyst and mostly not concerning at this point wasn’t enough shock for Ethan.(sarcasm)

Ethan took the news fine. His sternum was cut open at one point so a small wrist surgery is no big deal. Then they told him he would have to have ANOTHER covid test (insert eye roll here) which in Ethan’s mind was worse than surgery.

I went online and filled out the screening documents and got the ball rolling to start the testing for being Ethan’s live kidney donor. I received misinformation earlier about only needing to have the same blood type. You have to have the same blood type and share some other markers. I needed to find where to go to get the bloodwork done to test for me being a match. The complicating factor was insurance for me. I hate insurance because I don’t know enough about it and find it is super boring.

I also started wondering about home life and what that will be like when Ethan has to go for dialysis. I googled where he could get dialysis done until his wrist heals that is close to home. Would insurance cover it if it’s done anywhere? What are those rules we have to follow?

I also sent some emails because I still am behind on getting Ethan’s college plans and deadlines in order. I am trying to get him to button down what he wants to do as we need to get our butts in gear. 

He is going to try to attend class tomorrow. I am putting a sign on the door DO NOT ENTER. I will personally greet anyone that enters (except his nurse) with a punch in the nose and a direction to go back and read the sign.

I then met with one of the heart transplant team members and was told that the surgery is cancelled for Friday because they want to make sure that all the teams were on the same page with the fistula surgery.  STOP THE COVID TEST!  Ethan was able to avoid the covid test for today. Phew! 

I then (with encouragement from a friend) posed the question if Ethan eats 1cup of cookies and cream ice cream, how many ml’s would that be if you take into account the solids of the cookies. Miraculously.....ice cream is now not a liquid per the renal team. The nutrition team is the one that posed the restriction. I am going to go with the renal team because it is what I want to hear. At least I am honest about it.

I felt like today has been an emotional yo-yo. This cancelation will delay our departure to rehab but not by much. Also, I would prefer to have all the beautiful minds sign off on this and no have regrets later with complications. There are so many moving parts to Ethan’s medical teams. “He is a complicated case.” They said. I laughed. “Yes, that’s my kid.”

The psych team came by and Ethan refused to talk to them. He was done for the day. Emotionally. They will come back tomorrow. Luckily I gave them the heads up prior.

He had afternoon dialysis and was told that ultrasound would be by around 6:00 pm. He had lab work done immediately after dialysis. They were able to remove 2.5 liters.

6:00 pm came and went. By 6:45, I reheated our dinner and by 7:30 pm, 8:30 pm and 9:30 pm they still hadn’t arrived. Maybe tomorrow? Ethan still has to go for MRI. Who knows when they will come and get him. I have advocated that he be away from the room for the least amount of time as possible.

Today was busy. I am feeling a bit run down and overwhelmed. I remember when I would get stressed about juggling everyday life at home and this is an entire new ball game. I am getting news about cysts in the brain and ignoring it because it isn’t highest priority. 

We post-poned dinner for our 6:00 pm ultrasound appointment. At 6:30 I warmed up dinner because they didn’t show up. Have they met hungry Ethan? Today is not the day. But, we ended up eating and I had his nurse bring him some ice cream. Because it is not a liquid. 

The amount of coordinating as well as trying to preserve Ethan’s mental well being is overwhelming. I was so thankful that so many people are on my side, helping me along the way. I often forget who to call or email for what. I have a nice support team here as well as at home, complete with cheerleaders to help me through these mind bending days. I am so thankful for that.

Bright spot for today.  Ethan’s true weight is going up. He is 96# today after dialysis. It must be the wing sauce I bought. And...ice cream is not a liquid. Woo hoo! It won’t come out of his 29 oz allotment for the day.

Ethan and I were twinning in our matching shirts that were given to us by some pretty cool nurses. ❤️  Zion is on the bucket list....some day.