As you know, today was our trip down to Phoenix
for a delightful infusion of IVIG (intravenous immunoglobulin). And all went fairly well. I mean as well as
sitting with your three year old as she receives distilled plasma to mask the
fact that she has no T cells for the foreseeable future can go. Oh I’m assured that they’ll eventually begin
popping back up. But for now, the term
is “open ended therapy plan”. Doesn’t
that sound ever so much nicer than we all know it really is?
But the good news is that she had no adverse reactions.
She could have. They were going to pre-treat her with
Benadryl to have her take a nice long nap. But do you think this could possibly work for my odd little duck? Well of course not. Kajsa has a paradoxical response to
Benadryl. In other words it makes her
bounce around the room like a sugar
glider on crack. We found this out
after her first pediatrician recommended giving it to her during a two hour
flight from Seattle to Phoenix . If the flight attendants could have gotten
away with throwing us from the plane, I think they seriously would have. Yep, we were those people.
Fortunately, I had the forethought to call Mary up last week and remind her, so that they could order the Atarax for Kajsa. Pretty strong stuff, if you ask me. But did it touch Kajsa?. Hmmm… If you count eyes at half mast for a couple of hours – sure. But this drug is supposed to knock her flat on her tiny tush. I have mentioned that Kajsa has never napped unless she’s sitting at her grave with her feet dangling over the edge, right?
So there we are, Kajsa and I, for about four hours of pure unadulterated boredom. I’ve read three books, five times each. Kajsa’s been distracted with pizza and chocolate milk. We’ve even requisitioned a TV with video and DVD from some poor gal who’s feeling too pukey to care. And what should happen? The fire alarm goes off.
So I grab my daughter my purse and my knitting. Uhuh, you read that right. I’ve invested waaay too much time learning to knit this pair of socks. I’ll be damned if I’m going to let them burn up. But enough about my recent fiber obsession. Back to the clinic. There we were with the most ear piercing of sounds filling the air as Mary and I walked out with Kajsa and, of course, Kajsa’s IV pole. We wver so slowly filed out with the rest of the folks currently inhabiting building B.
Now, Nephrology (kidneys) shares a clinic space with Hematology (blood) and Oncology (cancer). And since clinic was over for the day, the only kids hangin’ out were those who, like Kajsa, needed a transfusion, infusion or chemotherapy. No one was feeling up to par.
If you think back to your days at school I’m sure you can remember fire drills. We all walked out to the street where we were instructed to stand in single file and for Pete’s sake, SHUT UP. Looking back on it now, that was a beautiful thing. For today, the area was eerily quite. No one was shrieking or running around where they shouldn’t.
It only took a few minutes for the fire trucks to show up and make sure that everything was copasetic. And strangely, Kajsa’s therapy ended while we were outside. So when we went back indoors, we were able to de-access her port and head home.
It was on the drive home that I stopped by a fellow FreeCycler’s house to pick up some plants that she had to spare. I now have a bevy of new flowers including Hollyhocks, Tiger Lilies, Mint, Verbena and Columbine. The last half hour of our dive home was so deliciously fragrant. And with that sweet smell in the air, I finally allowed myself a deep breath to release the day and permit that pure sense of relief that comes with escaping the hospital on the same day as our arrival.