5/7

I was quite frustrated this morning. We went for bloodwork for our timed blood test. We showed up early and when I gave the script to the lady, she told me that there weren’t any tests on my script that were timed. I pointed to the timed test which is why we have to drag our asses out of bed and rush in the morning to get this test done. I didn’t present it like that. I used a nicer tone for sure.

We normally get it done on Thursday’s but since we didn’t get home from the hospital until almost midnight Wednesday night/Thursday morning, we pushed the test off until today. 

The lady looked at me and told me it would be an hour wait time. At this point it was 8:30. The time the test should be drawn. Ethan’s class starts at 9:00 am and he is due for his rejection drugs at that time too. Frustrated with the situation I left. I called another lab and they gave me the same line. So we drove home and I stewed over the lost time, lost gas and frustration. Now I have to ask for clarification and help with this, an email exchange when I arrived home.

I emailed our transplant team and explained why we didn’t get the tests done they requested. Tests that would significantly help them understand a little bit more the seizures Ethan was having. Ethan suffers because of this setback.

The transplant team that works with these timed tests with literally every patient they have, had never heard that the test he needed was not considered timed. In fact that is pretty much the whole idea of the test is to be able to make sure the dose of medication is within the therapeutic range by timing it just before the next dose is  due.

I gave the lab info to the transplant team in NYC and they are going to call and communicate what Ethan’s needs are for this test.  The worst part for me is knowing how to draw blood and not being able to. I briefly looked into becoming a certified phlebotomist. I already have the skill part down I just need the piece of paper. I did read about the hours of experience needed to become certified and wondered if I could count my animal experience. It would be so much easier if  I could potentially draw his blood. He has great veins and no fur. I could probably do it with my eyes closed.

Our new 4 day a week dialysis schedule starting next week is interfering with some already scheduled appointments. So I am calling a bunch of different offices to reschedule physical therapy, eyes, cardio to accommodate dialysis. What a disaster. I am constantly hitting roadblocks. One lady I had to end the conversation with and call back because she was just rude. She treated me like a twit because I had to reschedule an appointment. I am normally very punctual and organized. I was not at all fond of this woman’s tone nor insinuation that we were being difficult to reschedule. 

I almost invited her to walk a day in my shoes but dismissed her attitude and ended the conversation kindly even though my inside voice (in my brain) wasn’t using kind words.

Another lady offered me an appointment a month from now, which was going to good things up for Ethan if he waited.

I think my lack of sleep is catching up with me and shortening my fuse. I have been sleeping on an air stress in Ethan’s room to make sure he doesn’t have any seizures while he sleeps as we navigate this new seizure medication. 2 nights ago leaving the hospital at 11:30 was far past my bedtime.

One of my frustrating appointment reschedules a good friend helped out. She likely has no idea how helpful she was. I had tears of gratitude falling down my face while at dialysis today. She swooped in like a super hero and made my day so much easier. She removed a load of frustration from my plate which was such a wonderful gift.

Ethan had yet another covid test today for switching dialysis centers. I should count all the covid tests he has had. It has to be at least 30 or more. Poor kid.

I get my second covid vaccine after dialysis today. While sitting in dialysis I was hoping that the new adjustment and medication we started for seizures will control the electricity in Ethan’s brain enough to not seizure today. We are both on edge because of it.

The hospital asked if we wanted to stay an hour after dialysis was done. After trying to reschedule several appointments and the shit show that surrounded it, I declined. I just want the covid vaccine over and hope his brain cooperates.

NYC wants to send him for an MRI for his brain. I like that idea. So we will be adding that in to the mix in the next couple of weeks.

We left the hospital and went to CVS for me to get vaccinated. The timing worked out well. Ethan and I were both nervous about him having a seizure. He politely put up with me asking him if he felt ok like five thousand times. Every 3 minutes at least. I got my shot finally. Glad that is done with. 

I “pre-gamed” with 68 oz of water during dialysis. I am hoping to give me immune system some good hydration to get me through as I make immunity to stupid COVID.  Basically I have been drinking water and taking vitamins this evening.

The alarm is set for us to go BACK to the lab in the morning. Then we can get our “untimed” but actually timed lab work. I try not to schedule things on weekends because they are days for catch up homework and to not have to be anywhere.

My bright spots today were my wonderful friend that helped immensely. She really was such a big help. Also, my other bright spot was that Ethan didn’t have a seizure. That is one time in a row. Lastly, that I got my second covid shot. I can officially cross it off of my list of things to do.