10/27/21

We found out our surgery date at 4:45 pm yesterday. I was also told I needed to complete another round of lab tests. So this morning I drove about an hour and 15 minutes to the closest lab that communicates with NYC, to have my labs done.  My appointment started at 7:30. It was an early morning.  I had my therapeutic blood letting and urine test. Then I was on my way back to Rochester.

My phone blew up today with calls, texts and emails from New York City. Between Ethan and I, there were 8 appointments made, with more to come, all in the next few weeks. Mostly video visits thankfully. So far I have my pre-op visit (in-person) scheduled, waiting to hear when Ethan’s is. I am trying to make it for the same day or at least close together. The 6 hour drive is not for sissies.

I also have to keep my team and Ethan’s transplant team separate. It is hard to remember who goes with whom. I get calls for appointments and I have to ask what team they are on.

I have a place I am trying to rent to stay. It is different from last time. A little farther from the hospital, but not by much. About 20 blocks away or so. I should receive the final answer tomorrow.

19 more dialysis sessions. Then I will gladly say goodbye to dialysis. Ethan will too. The machines takes up space in his room. He doesn’t have space for anything.

Today, the reality set in for Ethan that there will be another surgery. The day was full of anxiety and questions about logistics. We then had an impromptu therapy session. I was the therapist. I never know what hat I am going to wear as a mom. Today it was the therapist hat.

He talked about how terrifying it was to do this again. How it is supposed to go smooth, but he is worried it won’t. He didn’t sleep well because his mind was racing. He is excited for the next chapter of his life to start and to put this behind him. But he is worried his body will fail him the same way as last time. He is worried about keeping up with his college work load. All of these are legitimate concerns. I encouraged him to talk about it to anyone who will listen. He needs to get it off his chest.

Paul is worried too. He is worried about how he is going to juggle it all. Work and hospital and Avery and home….he is concerned about both Ethan and I having surgery. He has a tornado of anxiety swirling around in his head.

I probably didn’t make him fee any better. I said to him “if I die, at least you will get some life insurance money and can hire a maid.” He really didn’t find my response as amusing as I did. The maid would likely do a far better job than I would, so I considered it a bright side.

“If I die, at least you know it was while I was doing something I loved…..helping the boy.” He was slightly more amused by that comment…but not really overall. That was my pep talk. He should know that it isn’t really that easy to get rid of me and that I am tough as nails. I am stubborn. 

I however, am completely at peace with all of this. My head space is looking at a future without dialysis. I don’t feel like my life has been my own for well over a year. I have had very little control.  I am a Gumby doll. Whether it is me having to work, or drive here, or talk to this person, or do this task and that task…..need to do dialysis. Not ideal for an introvert. I get a glimpse of normal here and there with a quick evening at a restaurant or camping, but it quickly fades because I have this overwhelming obligation to keep this kid healthy. 

Between work and dialysis, that takes up pretty much all of my awake moments. I am miserable, but then think of the mom that would give anything to just be miserable and not absolutely devastated and just have their kid back (donor heart). There’s that perspective again. It keeps life real.

I over hear people say to one another “did you watch this series on Netflix?” I am jealous because I don’t have that luxury. Then I think of the mom of our donor and am thankful. In fact, the donor family is always on my mind.  Our one year anniversary is coming up. I have started a letter to the donor family, but it is an odd letter to write. This should be an English class assignment for kids. 

As we move forward, the next few weeks are going to be quick, chaotic and grueling. I might need a two day morphine nap after surgery.