Jiggety Jig (Post 5 day 4)

Today is Saturday 4/18/20

Summary:
We came home yesterday afternoon.

Details:
Looking back at different hospital stays these are the different ways I feel when leaving the hospital
#1)  Sick of hospital, get me out no matter what, I don't even care if we are on the mend
#2) So grateful we are getting better and have answers and a good plan moving forward
#3)  Feel pushed out the door, no real answers, no good plan, no one listened to Mom, it was not a team decision

So leaving the hospital yesterday was definitely a #3.

As I pulled away from the hospital yesterday I started crying.  My only solice was my plan to stop at the Centerville Chik Fil A and get a LARGE FROZEN LEMONADE.  Have you had one?  They can basically fix all of life's problems.

Yes her seizures had stopped.  But she was completely stoned from the seizure meds.  She was just staring off with glazed over eyes.  The color in her face and lips was really pale and she just looked terrible.

No one asked me how I felt about her coming home.  No one asked how her temperament/demeanor was.  I was super frustrated.  But at the same time really grateful to get away from my toxic incompetent hospital team.

To clarify...I am not blaming the Dr.'s for the situation.  I am just as much to blame.  I am not good at communicating.  But as a team of Dr's and Mom together we were a toxic and incompetent team.  It was not a good match.

Anyway, on to today.  I am feeling better about the situation.

They wanted me to continue giving her the high doses of seizure meds until I can get an appointment with her regular neurologist next week.  So in the last week we have gone from her normal dose of 500 mg of keppra (seizure med) twice a day to now we are giving 1000 mg keppra twice a day as well as 50 mg vimpat twice a day.

It is a lot.  It is more than double her normal dose.  It is making her very sleepy.

In good news her color looks better today and I have gotten a few smiles.

We never came up with a good reason why she was struggling.  Her blood still looked like she had a virus, but we could not pinpoint where or what the virus was.  It coiuld defineitely still be a virus, but there are only a limited number that they test for.

Also the c-diff came back negative.  I could not convince them to run any additional stool tests like rotovirus, etc...

Her left lower lung still sounds diminished (not moving great air) so there could be something viral there as well.

We are grateful to be home.  Overall she is doing well, other than being drugged up.

Please ignore the typos...my touch pad on my chromebook is not working very well.