Medical Issues

Day 2 of Retesting Hunter

Day 2 of Retesting Hunter

Day 2 of Retesting Hunter

Today, geez.  It started off with someone scaring the crap out of me at 5 am.  I actually slept on and off between 1 and 5.  Well, we are up now.  Neuro said that Hunter tested positive for Co-Vid.  There is some added fun.

Where on Earth?

I have no clue how this even happened.  He has not been symptomatic at all.  Honestly, he goes nowhere, so the people (my kids and husband) coming in and out of the house must have brought it in.

I asked for a day 2 retest and they did.  Guess what?  It was positive too.  Now, we are on another floor, in complete isolation.  We are still getting testing done, but he will be moved to the last on the list.

Lots to Do

He is supposed to have an MRI and an LP (Lumbar Puncture) today, under sedation.  If you have sedation, you can’t eat or drink.  He is hungry and thirsty which is going to make for an unhappy boy.  Negative is now, he has to be last on the list.

His blood tests came back normal, except his iron is low.  That is fixable.  All the other doctors will be coming in today.  *Some stranger is peeking in his window and waving.  Quite creepy if  you ask me.*

Positives and Negatives

Positive:  People don’t bother us.

Negative:  Co-vid.  Grumpy child.  Isolation.

Also, a HUGE negative is that we are now being discharged because he can’t be under sedation for 20 days.  Bloodwork was done, we got urine on him.  The Rheumatologist and behavioral specialist will see him BUT the most important thing is the MRI and the LP.

So, we have to come back in 20 days.  The fun never ends.

**So far, everyone else in my family has tested negative.**

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Day 1 of Retesting for Hunter

Day 1 of Retesting for Hunter

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.

I’m ready.

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.

Good times.

Luckily, he slept well and was overall really good.

Day 2 begins the round of testing.

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