Day -9

I'm not sure how much we talked about "Day"s during her previous treatments.  So, I'll reacquaint you.  The day number is very important.  It is what everyone refers to when looking at her very specific protocol and administering her meds.  In total, they refer to it as her road map, and we look forward to certain things happening once we reach "Day X" or "Day Y."

Today is Day -9 which means we are 9 days away from transplant.  On Day -9, two big things happened:

1. We are getting Dilantin at 8am and 8pm which is an anti-seizure medication.  This drug has lasting effects and prepares her for the chemo she will get on Days -8 through -5 which are known to cause seizures.  Dilantin has apparently come very close to completely preventing seizures.
2. She got a single dose of IVIG.  It is basically a bunch of antibodies from over 1000 blood donors that boosts her immune system so that she is a bit more protected from the world before we wipe out her bone marrow. IVIG acts similar to blood products (red cells, platelets, etc) so we were on the look out for her to react in an allergic manner to it.  They "pre-med" her with Benedryl just incase and start out giving the IVIG slowly and continue to ramp up the rate as long as she does well.  

She DID have a reaction and it was a bit frightening for me because it has been 5 weeks since I've had anything that actually needed reacting to.  I thought she was just tired.  We had had a ton of people in the room (the dietitian, OT and PT, the attending and the resident, the deacon, Dr. Dahl and an undergraduate to whom he was showing the different types of patients they treat here) and I had assumed that she was just ready for a nap.  We didn't get the best sleep last night and it was nap time.

But as she was "trying" to fall asleep, I realized that she was really grunting and bearing down a fair bit (assumed possible constipation), and then that her arm was kind of shaking.  Even when she has had screaming fits for an extended period (which is very infrequent), I've never seen her shake/shiver/tremble.  I picked her back up and realized her entire body was trembling.  It wasn't the reaction I was expecting to the IVIG, but I knew now wasn't the time to be "tough" or assume things are fine.  So, I pressed the nurse call button.  The nurse immediately confirmed that she didn't like that Clara was shaking and gave her a double dose of the Benedryl.  I don't know how long it took to work, but as I watched her high heart rate, her temperature fall and then rise again, her continued shakes that she was trying so hard make stop, I was so glad I pressed that darn button and the nurse knew what to do.

She is doing fine now.  Her temperature is still a bit high although not alarmingly so (100.3ish).  Her blood pressure is normal. She has been playing in her bed and in her Excersaucer and then took a nap.

OH!  Perfect timing!  She just woke up!  Things will get crazy tomorrow.  Pray for a good night!