Day 1 of Retesting for Hunter
Recap Day 1 of Retesting for Hunter. Today is actually day 2, so I’m going to be a day behind all week. Tis the life, I guess. Anyway, I dread hospital days. Usually, I start getting anxious about a week prior, and then it hits hard the day before.
This time, I got a head start on packing and I was going to pack light. Last time, I packed too many snacks and clothes. The first time (almost 4 yrs ago), I packed little to nothing for a 2 week stay. I have one bag for both of our clothes, a book, and my slippers. Then, I packed my purse that has my little bag of bathroom things, essential oils, and electronics. One bag. One purse.
Once I’m Ready
Then, I am ready. I have a coke in the fridge, water, and we are rolling. This time, however, was different. First, I was supposed to check in on Memorial Day. Doc said that we should put it off till Tuesday. Okay, fine. Adjustment.
Monday night, I went to do the pre-visit on Telehealth and it had that I was SUPPOSED to come on Memorial Day. I messaged. No response. I called. No response. I messaged hours later. No response. Are you sensing a pattern?
My Whole Mojo was Thrown Off
Tuesday comes and I start calling. Guess what? No response. I called admissions and they said they had him down for coming Monday. There were no orders for him to be admitted on a Tuesday and to not come (a long drive for me).
I messaged the office 4 times. Called 3 times. Then, I called admissions again. Finally, after my whole mojo was thrown off, we left about 3 pm. It rained the whole way down, so that was an added element of fun in the non-existent sun.
Getting in Our Room
We got settled and a neuro doctor came in. She was letting me know what all was going to be done. Then, we talked about his new or increasing symptoms of rage, OCD (or tics), his vitiligo, and other things. I informed her that she needed to look at his last visit and whomever the 2 neuros were that took his cath out, they were not to get near my son. Her eyes widened.
Of course, this is a neuro I had never met and she wasn’t aware of the plasmapheresis trauma. Tough. Just tough. I will say that our IV team (the team consisted of 1 person) was unbelievably phenomenal.
Blood Tests and Co-vid Test
He had a lot of blood drawn for several different tests. Also, he had a co-vid test which was HORRIBLE. I mean, he grabbed the stick, shoved it up to his nose more, and SCREAMED. Then, he broke it.
Luckily, he slept well and was overall really good.
Day 2 begins the round of testing.