6/14/21

4:00 am.  The alarm went off. It’s dark out. I was sound asleep. I got up and woke Ethan up. He is not quite as fast as he used to be in the morning. 

I let the dogs out. I even listened for coyote like I always do. All clear. Within a minute, I heard this terrible screeching noise and knew that one of the little dogs was being attacked by something. Omg! Then I heard Penny bark and knew it was Ferguson. I quickly put penny and Phineas in the house safe. I could hear the screeching and screaming tortured cries as I am running through our yard with socks on clapping and screaming into the dark to the back edge of the yard. 

It didn’t sound like a coyote. The screaming screech was echoing off of all the trees and with the blackness of the night I needed a flashlight. I sprinted in my wet socks back to the house. I rounded the corner to the front of our house. Since when could I run this fast? And then, I saw his beautiful, precious old dog, grey face. Ferguson was sitting at the front door unharmed. Just looking at me questioning why I was screaming and clapping at 4:00 am. I snatched him up and squeezed him a little harder than I should. But what the hell is going on in our back yard? Possum fight? Raccoon fight? We went the hell inside and I took a moment to recover from my almost heart attack. Ok, now I am up.

We pulled out of the driveway at 5:00 am. There was one point where I was feeling quite sleepy and had to pull over. A quick walk got my brain awake. I don’t really enjoy driving, I am a much better rider.

I got to the hotel around 11:15. It is in NJ just across the George Washington Bridge. Their check in time was 3:00. She told me to come back then. I could tell the lady was a bit annoyed I was there so early. I asked if I could just park my car there while we went to the hospital. I understood we weren’t really following policy and didn’t really care if our room was available or not. I just needed a free place to stash the car.

She asked when we would be back and I told her this evening. I also told her that I had a delivery somewhere. She pointed across the lobby and I saw the 6 large boxes. “Yep! That’s it”.  She then found a room available on the ground floor.

I profusely thanked her and left. I know she didn’t have to do that but her kind heart was so much appreciated. I walked back in. “Hey, thank you again. This is the first time I have traveled with a kid that needs dialysis. You have really been helpful.”

We had to bring the dialysis machine, all of the stuff I needed for two dialysis treatments. The machine itself is about 70#. I had another woman help me carry it into the room. She did not speak English. I am not even sure she knew what I was asking but I used some sign language and interpretive dance to act it out.  I spoke slow and loud for some reason, even though her hearing was fine. I was very thankful.

Ethan’s anxiety was at Threat Level Midnight. He is now finding that certain noises (pumps going off), and even the wrist band was making him feel the whirly twirly’s of anxiety. When we heard a pump alarming, I had flashbacks from my own hell.

Our first visit was hematology. They wanted to draw extensive bloodwork. Knowing he was likely to get contrast tomorrow and only one arm to work with (his other arm still has the maturing fistula and can’t be used) I lobbied to get all his labs on Wednesday morning.

Next visit, infectious diseases. They talked about things that can cause every sort of issue with someone immune compromised. From molds to bacteria on the skin, pretty much everything can cause infection. It was a bit terrifying but we will deal with in. The doctor was so nice and pleasant.

Then onto the covid test. We went to a total of three buildings. Ethan got his physical therapy. He probably walked over a mile today. 

Our last stop was 9 Tower. We saw a lot of our favorite heroes. We did have to sneak up the elevators and use the staff elevator but we did it. We even saw the surgeon that performer Ethan’s transplant. In his cute French accent “fantas-teek.” He said.

We did well today overall. We ended it with Chinese food. We have an early morning. We are going to bed early. I say “we” but I mean me. Ha ha.