9/1/21

King Midas had the golden touch. It seems today, I had the crap touch 💩. My brain must be quitting. I had to print a paper and submit it to SSI, the paper was password protected and I had to reset my damn password like 7 times settling on a swear word as part of the password and a damn @ sign.

I finally accessed the paper only to find that our WiFi connected printer wasn’t actually on the WiFi. So I had to go to a computer directly hooked up to the printer which was on a different floor and do it….but only to log into my account and find, it didn’t like my swearword password with the @ sign. I reset my password yet again ( did you know it doesn’t accept middle finger emoji’s as a password?).

Went to get set up for dialysis today, I had made a new SAK (which takes 6 hours to procure) last night over night.  (I am withholding my inappropriate comment about that word).  When I went to prime the cartridge, the PAK expired. You have to change it every 3 months. The machine had me waste all 50 Liters of dialysate. Who has another spare 6 hours to make a new batch? We needed to do treatment now!

I had my back up bags that I carried upstairs in 5 gallon increments for a treatment. I had to hook all that up which is time consuming. Everything was a big pain in the arse. Finally after about an hour of delays, I told Ethan I was ready to do dialysis. He was a bit terrified as he heard the verbal masterpiece I had spewed out over the past hour. 

Plus the machine kept beeping. Why is it so loud? It is traumatic and physically hurts to hear. I was just telling someone that the machine wasn’t like Janice at all….I sealed my own coffin with that one. 

“I am ready to start.” I told him

I was hot with anger and sweating all over the place. He looked at me a bit terrified. “You need to settle down before you do anything……medical…..with me.” Ethan said. I was completely in control of my emotions as I donkey kicked a box to get it open instead of getting the scissors. His eyes were big.

We got upstairs and I got him all hooked up. I checked all my clamps. Everything was open…..perfect. I started treatment. Everything was going good for about 20 maybe 30 seconds….BING! RED ALERT!!!!!!! The machine stops. Ugh!

I looked up the code. I read through the trouble shooting steps. Nothing was off. I pushed stop, then start. 20-30 seconds later BING!!!!!! RED ALERT! The machine stops.  I do the very same steps I just completed, had him move a little. 

Start the machine. 20-30 seconds later BING!!!!!! RED ALERT! The machine stops. This fun little cycle happens several times. I then call the company. I keep starting it, knowing at least his blood is moving and not clotting. 

I talk to a guy on the phone. He’s really nice. He tries to help me, but he is telling me to do the same steps I have already done. I was getting frustrated with him. He then had me try something different and we lowered the volume of blood that the machine was moving per minute. Hmm. That worked a little bit. But not great.

He then told me that unfortunately catheters are finicky and this may be a issue with his catheter itself (which I almost threw up because I know how much Ethan does NOT want to use his fistula).

I call my dialysis nurse. I was out of sorts because I dialed his phone number on my CALCULATOR!  I tried it again with the actual phone function.  Surprise….surprise…it worked this time.  He must have come to the phone with his magic “fix it” cape on. He had me do a few things. More beeping. Ugh! Treatment still hasn’t officially started. 

He had me switch my lines and it WORKED!!!!! He is magic! I was still sweating. I was crabby…..and in an instant, I felt relieved. I have a picture of my alarms below. OMG!

At most I have had like 3. Are you kidding me with this?

I made a couple phone calls during dialysis and discovered that an appointment had been scheduled for us tomorrow morning at 7:30 via phone. Would have been nice to give work less than a 24 hour heads up on that one. Then at 8:30 we meet with a hematologist via zoom to get clearance for transplant for Ethan. Then Ethan is going to go right to his 9:00 online class.

This poor kid.

Tonight he was upset because he was overwhelmed with the transition of having free time to having to manage his time and balance the work he wants to do on his car with school. He is frustrated with always having some medical issue. Some appointment or someone he has to talk to medically. He also can go from feeling pretty good to feeling pretty lousy rather quickly.

We talked about how this is a temporary situation. It feels like life is not moving for him, but it is. Look at where he was 6 months ago. He was struggling to walk. Look at him now.

I can’t even begin to understand the trauma he has sustained. He collected himself  and went back to doing his homework.  Juggling school and renal disease is not for the weak.