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
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.