4/8

 Another beautiful day outside. I have been taking walks around the neighborhood during the days. I miss walking my dogs. I am enjoying watching the trees blossoming and the flowers coming up. The neighborhood is a bit sketchy and I don’t always feel safe. I make sure to practice all the safety precautions when walking alone. Also, I manage to pet every single dog I see. Bonus points if it is a pit bull.

I was able to get Ethan outside for some sunshine therapy. I have noticed his eyes are more sensitive to light after transplant.  We talk about him having to really keep his scars protected this summer. 

On our way outside, we shared a laugh. We were waiting on the second floor to go down to the first floor, where security was.  Ethan happened to look over at a sign that had a big red stop sign. STOP it read.  “Are you sick? Do you have a fever? Do you have upper respiratory symptoms or gastric symptoms? Do not visit your loved one.”   Ethan asked if it was a little late for that sign to be on the second floor...for someone to decide to not visit their child.  “Shouldn’t this be on the first floor so that people aren’t spreading covid?” We laughed about it. Good observation.

Our room mates mom stayed away which keeps us happy. The room is quiet for the most part.

We met with Ethan’s doctors in NYC and he is doing well. We buttoned up plans for next Wednesday. Dialysis will be a challenge for us that day. We booked the latest appointment and gave the heads up that if we are late we will come Thursday morning.

Part of going to dialysis they teach you about why you shouldn’t miss appointments. People that miss appointments can have strokes, irregular heart beats, have shortness of breath from fluid overload, it can cause issues the next dialysis appointment that he goes to and even cause sudden death from the toxins building up to quickly. Ok, point taken, no missing appointments. I don’t want to screw with that stuff.

Hopefully the Wednesday night appointment will work out. It’s going to be a long day for sure.

As we dwindle down to our last couple of weeks here I Didn’t realize the coordination it would take to set up specialists in Rochester. Dialysis in NJ needs to be in contact with a nephrologist in Rochester which has to be in contact with the kidney transplant team in NYC. We have to have appointments set up as soon as we get home. We may push off departure off because they don’t want us to meet with a nephrologist and then get dialysis going into the weekend. Ugh!

We can’t go to dialysis until we see a local nephrologist and the treatments will be done at strong until further notice. Well that is a damn pain in the ass. We also need lab appointments that are timed. We need to make sure the cardiologist is Rochester and NYC cardiology transplant team are getting them.

It seems like it will be overwhelming but at the same time some how I know it will all get done. We will figure it out. 

As we are winding down and only having a couple weeks left here, each day feels like a year. I find out more information about how life at home won’t be the same as it was before. While we may face medical challenges, we are so thankful to have Ethan with us each and every day (even when he is a pain in the ass).

Today Ethan was able to get up from bed, get himself ready, toilet and walk back to his bed all by himself. That is progress. He was steady on his feet. He is walking to all his therapies. The wheel chair sits like a lonely outcast outside our room. He is trying to do his school work so he can graduate. I am proud of him.

He could use more manners eating noodles. He must have learned this technique from his father...