Not quite yet

So Wed I arranged with everyone that she would go back to school on Thur.  But then in the middle of the night I kind of freaked out and couldn't go back to sleep.  I was worried that what if she is more susceptible to germs and getting sick while she has the infection and/or on the IV antibiotic.  Also, that night her heartrate was in the high 120's and really even during the day it wasn't going below 100.  So the high heart-rate I figured must either be pain or infection.  She wasn't acting like she was in pain...but I was hoping it was pain because otherwise it would mean it was the infection.  It wasn't like her heartrate had been lower after the clean-out and then gone high...it had been high (above 100) since the cleanout...just for some reason it freaked me out in the middle of the night...probably I just needed sleep.  It really wasn't a big deal...but I just got scared that maybe the infection wasn't getting better and then they were going to have to take out the rods and the baclofen pump and then she was going to die from meningitis.  (You know when you spiral out of control with worry---yeah that was it).

So I decided since they were coming to do more blood-work on Thur and I would have to talk to Roz on Thur about the test results from said bloodwork that I would wait to send her to school.  I also wanted to call Dr. Klatt and see if pain would be normal.  Because like I said, I wanted it to be pain, not infection.

So I decided she was not quite ready for school.

I called Dr. Klatt and he said that he wouldn't be surprised if she had pain for another month or so.  That was a relief.  Then at least I could blame the higher heart-rate on pain...whether or not it is true I don't know...but it gave me hope.

Roz said that her numbers looked better.  Her EOS had been 11% on Monday (5 % or below is normal) and on Thur they were 7%.  Her CRP had been 8.4 on Mon and on Thur it was 5.6 (0.8 is normal).  And her ESR (another marker of inflammation) was up a bit from Monday, but it tends to peak later and takes longer to come back down...so they are hoping it just hadn't peaked yet and it will now start to come down.  They will continue doing blood-work every Monday.

I asked Roz if she would be more likely to get sick from cold/flu germs at school while on the antibiotics and/or while she had the infection...she said no.  She wouldn't be any more likely than she would be normally.  And in her blood-work it showed that her response to infection was good.

So I felt a lot better about sending her to school...but I still decided to wait until Monday.

I was scared to tell Roz about the high heart-rate thinking she might freak and want to pull all the hardware out.  But I told her anyway.  And she didn't seem to batt an eye.  (Would that be bat or batt?)

But she is doing really well.  She is awake and alert every day.  I think she's probably bored out of her gourd here at home and I think she will love going back to school.  Her heart-rate today has actually been in the 90's (which is still higher than normal, but lower than it was).  She has not been having any fevers or pain that I can see...just the higher heart-rate.

My normal thresh-hold (before any of these surgeries) was if her heart-rate was above 100 then we would give her pain meds whether she appeared to be in pain or not.