6/16/21

Trying to get over the George Washington Bridge during rush hour traffic is a disaster. I can’t believe people do this daily. We honestly could walk faster.  Stop, roll three feet, stop….everyone driving around us making the same annoyed traffic face. Seeing people mouth the words “what the f@&k?” Over and over again. It really makes me appreciate my low traffic volume, 6 minute commute to work. Two stop lights. Very simple.

With all the issues with Ethan’s rejection medication, I am a little nervous for today. Luckily these tests are done to find rejection before it really becomes a problem. We don’t really need another issue to tackle but if there is one, we can tackle it.

We stopped at the heart center. They took vitals while the lady was printing out our lab orders. They parked us out in the waiting room. She was still trying to get things together and you could tell it wasn’t going well. Our angel cardiologist came out just to say “hi” and to see how our trip was so far. The lady saw her and panic called her over. Exasperated, she threw her hands up in frustration because of all the providers. Our Cardiologist kind of looked at her blankly. 

I chimed in. “All of those orders are correct. We have multiple doctors that have been putting in their orders to spare Ethan’s veins.” The doctor turned to the lady and said “print them all.” and they sent us to the lab. 

We had two pages of labs. 😳. They lady had us “take a seat” because she had to “pick out all the tubes”. 😳. Being that he is anemic, that is a little terrifying sending him into a heart biopsy. 

“Wow!” She said.

“We are doing a little therapeutic blood letting this morning.” I joked with her. “Also, not to make this difficult but you can’t use his left arm due to his maturing fistula. Also, he has a bruise on his right arm from a previous blood draw as well as they put an IV in his right arm yesterday. He needs another IV in about an hour. Good luck.”

23 tubes later (Ethan counted them) he was done.

Ethan then had his echo. Unfortunately, they had an ultrasonographer that seemed to be training. In addition to that, it seems like there was a scheduling debacle. They scheduled an hour long echo AND EKG at 8:00 am. He had timed labs at 8:30 and his biopsy at 9:00. 

We were set up for failure from the start. 

They took Ethan’s vitals, then sent him to the lab. When we came back up, they started Ethan’s echo around 8:45. The ultrasonographer seemed to have an understanding of what she was supposed to do. At 9:45 another lady came in and said “the cath lab is looking for Ethan, we need to wrap this up.” So the lady that had come in, proceeds to repeat all the shots the First Lady had done. Jamming the probe into Ethan’s boney body causing him to tense up in pain. The new lady proceeds to tell the original lady ways to improve each shot. After what seemed like forever, they finally let us go.

We rushed down to the place we were supposed to go to have Ethan for his biopsy. He had not eaten and was being difficult and crabby. I was struggling to stay patient and kind. I wanted to meet his crabass-ness and raise it two fold. But I didn’t. That was hard.

We met with cardiology as well as they prepared Ethan for his biopsy. Ethan talked the ears off of the ladies from transplant cardiology. The poor nurse taking him to the cath lab couldn’t get him to stop talking. Even the nurse who has taken care of him before was shocked at this talkative kid. I guess he saved all his pleasantness for everyone except me.

As soon as he left, I met with the Renal Transplant Coordinator. Within an hour the Cath team called me to let me know he was done. It was almost perfect timing as my meeting with the transplant coordinator was coming to an end. Ethan had to lay flat for two hours.

Ethan was feeling pretty traumatized at that point. He was even more so hangry and crabby. He was inconsolable at best. I tried to remain compassionate but like a mother dog with her naughty pup, I  snapped at him because he was being unreasonable. That doesn’t help. But he respected it because it doesn’t happen often. We were released at 1:20 and had to be to his next appointment by 2:00. 

We quick grab Ethan a panini and I made him take it to the waiting room for the next appointment. This appointment was with urology. This is another requirement for kidney transplant. We arrived at 2:00. By 2:30 we were the people that had been there the longest but others were being called ahead of us.

Turns out that our insurance had not approved this visit. Likely an oversight of the office not getting this taken care of ahead of time, who knows and it doesn’t really matter. The office ladies scrambled to try and make it right. The insurance company said it would take 3 days. So the office wanted to reschedule us for Monday. 

It was a hard “NO!”. Are you kidding me?

After wasting an hour of waiting, an hour lost I could have been doing dialysis, we settled on a virtual visit being a nice parting gift.

We ubered back to the hotel and ordered food. The food was supposed to arrive at 4:10. I was able to get everything ready to start dialysis. The plan was to wait for the food to arrive and then hook Ethan up. At 4:10 they guy calls and asks if we made a typo with the hotel name. He punched in the address I gave to the hotel and it supposedly took him to a business around the corner. Even though the past could of food orders with the same address arrived with no issue.

The entire conversation was unproductive. He didn’t speak English AND he wanted me to provide explicit directions in a language I didn’t speak. (All while he had a gps. I could see him on my app.) At least that was what I think he was saying. Ethan and I watched him travel all around the “ass” to get to the hole. Finally at 4:45 he delivered our food…. On a bike. The delivery dude was on a bike. Like a bicycle without an engine. Then I felt terrible. He rode all over for 35 minutes on his damn bike. I wasn’t even mad anymore. At least he was trying to work.

I then hooked Ethan up to dialysis. Shortly after I got an alarm. I was troubleshooting (apparently with the wrong book) and it wasn’t working. I begrudgingly called my BFF dialysis nurse. I hate to bother him but had done all I knew how to do. He was already home and didn’t have access to the books to help troubleshoot. I ended up calling the company that makes the machine for help. They basically told me that there was an error that occurred too many times and the machine defaulted to end treatment at this point.”Shit!” Then  realized I said a swear word to someone trying to help me. “I am sorry I swore. I am frustrated.” I didn’t want to ruin her day, it wasn’t her fault. She started laughing at me. “Oh my god don’t even worry about it.” She said. She followed it with other nice things that helped. One of the last things she asked me was “is there something on the end of the waste tube preventing it from draining. I went to check KNOWING there wasn’t. Then I saw the little bastard. Damn it! I had put a cap on the end of the waste line yesterday so that stinky fluid didn’t drip all over the hotel rug.I am sabotaging myself! 

I ended up returning all of Ethan’s blood and ending the treatment and starting the process all over. 

“NO!” I am not doing this again. We had both hit a wall and then shared a broken down brief cry. 

“We are going to have a successful dialysis session. I can do this!” Giving up wasn’t an option. I mean it was, but I declined that.

Round two went much smoother. Phew!

Luckily the next time we come will not have as many appointments. This was a very busy overwhelming few days. 

Then I got the notification that we had 2 appointments for tomorrow morning. Nope. Sorry. Decline. I sent an email letting them know I would not be showing up for the EKG appointment tomorrow because he had one today. I don’t know what was going on with that.

We had a successful dialysis session. I cleaned and packed everything up. I then began to start carrying things to the car. Ugh! It’s well after 9:00 pm. Everyone knows this is past my bedtime. I finally came back in and declared that Ethan was on his own for the rest of the night. I was going to bed.

My bright side today is that this day is over. Tomorrow is a new day.