never a dull moment

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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.

woof woof

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What’s more fun than a barrel of monkeys?

Parvovirus B19, of
course. Actually, no. I take that back. Parvo absolutely
sucks. In fact, it worked really hard to
destroy Kajsa about 6 months ago. So she
became well acquainted with our old friend IVIG
(intravenous immunoglobulin).

And it worked wonders. At one time she had over ten billion DNA copies running around in the
blood. But, with a little help from IVIG,
she was able to recover. And we’ve been
monitoring Kajsa’s Parvo levels since that time. For the most part we have been relieved to
see a steady decline.

As of last month
they were down to 100 (or fewer) copies. In fact, we’d started to joke about the ridiculously, unbelievably high
levels she’d once shown. As you can
imagine, this month I expected to hear that they were gone completely.

So imagine my surprise when Mary called yesterday to inform
me that Kajsa’s Parvo levels are once again over ten billion.

It turns out that IVIG is incredibly helpful for 2 weeks to
3 months. After that, honey, you’re on
your own. So when Dr. Morgenstern called
the infectious disease docs, their recommendation was quarterly IVIG
treatments. Yippee.

The good news is that we’ll be able to do this
outpatient. They have a little room with
a recliner. (Gads, am I ever glad I took
up knitting.) So we’ll go sit there for
four or five hours while she has her infusion. I’ll try to read and knit. She’ll
try to climb out of the chair. It should
be fun.

Oh, and for a couple of things completely off topic:

I got the job at the salon & day spa. I’m supposed to begin next Tuesday. Woohoo! I’m VERY excited to start working again.

My initial introduction to the rest of the employees was at
a staff meeting. I was incredibly
nervous. And they were all so young,
pretty and stylish. I seriously felt
like the fat girl with toilet paper on her shoe. So I just sat there and smiled whenever
anyone looked my way.

Then, when I ran into the other LMT the next day, I was told
that they all wanted to know why I was smiling so much. (Great — fat, toilet paper dragin’, and
mentally challenged.) Thankfully, she
told them that I was probably really nervous. A whoppin’ big thanks goes out to Wendy, my newest ally.

   …   …   …

And finally, I’m learning to knit socks…on circular
needles. I feel like a total klutz, but have been told that everyone feels that way, at first. So I’ll just keep knitting along.

Seems like a pretty good way to get to
tomorrow to me.

first day photo blog

first day of pre-school-1

Yesterday was everything I had hoped it would be.  Chris came home early from work to bring me the car.  So he was able to load Kajsa up for her first day of preschool.  I really don’t know which of them was more excited.

first day of pre-school-3

We got there a bit early.  So there was plenty of time for playing on the jungle gym.  We were in the middle of a rockin’ good game of peek-a-boo, when…

first day of pre-school-4

Kajsa spotted another kid.  The look of wonder on her face is only barely captured by this photo.  After three months isolated in a hospital room with no children (and most adult visitors wearing masks, gowns, and gloves), I don’t think she’d realized that this was going to be a real event.  I believe that this is the moment when she truly grasped what was about to happen. 

Her eyes were glued to the other girl until she walked into the building.  Then Kajsa just turned and looked at me.  I asked her quietly if she’d like to go inside.  No comment…she simply nodded with eyes wide.

first day of pre-school-6

Upon arriving in the class room (and after the required washing of hands – yippee), Kajsa immediately sat down at the painting table.  Of all things, the lesson of the day was “taste”.  Could this have been more perfect?  For a kid who’s lived most of her life in a state of almost complete oral aversion to be surrounded by lip smacking gustatorialy experimental children – well let’s just say, it was good.  It was very good.  She may not have liked everything she tasted.  But the fact that she tasted numerous items was absolutely fantastic!

first day of pre-school-7

So she sat with her new teacher Ms. Polly.  Don’t they always have the cutest names?  I wonder if that’s a requirement for teaching preschool.  “I see here that your name is Brunhilda.  I’m sorry, but I’m afraid you just aren’t right for our establishment.”  Anyway, Kajsa was really taken with Ms. Polly.  Notice the rapt attention?  I may very well be slipping in my title of:

"Most Fascinating and Cool of ALL Women".

first day of pre-school-10-2

So I slipped away with a kiss and a hug.  Outside I placed Kajsa’s backpack on her very own hook.  Yet another thing that I found irresistibly adorable.  And check out the mischievous grin on that girl next to her.  I can’t wait to find out her story. 

*~..~*


I left for two glorious hours.  I took advantage of the time to not only do some grocery shopping ALONE, but to head over to the college.  There, I spoke with an advisor of the Nursing College.  I got lots of great information about pre-requirements and scholarships.  As I left, it began to sprinkle lightly.  It was all I could do not to skip or dance or something else goofy as I walked through the campus.  How could I have not realized what a wonderful opportunity learning was when I was eighteen?  I guess it’s just one of those things like wisdom that we hope come along with age.  I just wish I’d realized it then.

So I returned to the school as Maya was getting out of hers.  You do know that their schools are housed in the same building, right?  Good for me – mortifying for Maya.  Maya begged out so that she could run off with her own personal Jenny Piccolo, Tabitha, to stand around looking bored somewhere else do who knows what for the next 10 minutes.  They returned as I was retrieving Kajsa.  And after wandering around the room as Kajsa showed us all her new found treasures, we departed for the long drive home. 

It was a wonderful day all around.  I’d been feeling rather discouraged lately.  (Gee, I wonder why?)  But yesterday really renewed my spirit.  I’m even fairly excited about the next year, or so.

Ruff

crafty

Well, it was old home week at the hospital this week.  Yep, we were back in.  Didja miss us?  As you know, Kajsa is now immunocompromised due to her transplant – the effect of which is that she can have fairly sever responses to some normally benign diseases.  So when she began having fevers and a fair amount of lethargy, I packed up a few clothes and headed back down to Phoenix. 

Long story short, Kajsa has/had Parvo virus.  Yeah, you read that right…Parvo.  (You may stop barking now.)  This is a human form of the disease and not entirely uncommon.  My understanding is that most of us have had it.  And that includes you.  Yes, you out there.  Yipping away just isn’t as funny now, eh?

For the immunocompetent individual, Parvo primarily manifests itself as a red rash on the cheeks and trunk, and clears up in a week or so.  However, in immuno-compromised individuals whose immune system cannot properly clear the infection, infection can lead to a depletion of RBC precursors and lead to chronic hemolytic anemia and pure- red-cell-aplasia, a low red-blood-cell count. B-19-specific IgG immunoglobulin prophylaxis and/or RBC transfusion are used to aid immuno-compromised patients in clearance of the infection. This information is ripped from this lovely page provided by Stanford.  Thank you, Stanford.

What then, you may wonder, do you do for yon wee Kajsa’s poor ravaged eurythocyte population.  Well, we support it, while force feeding her body antibodies.  You remember antibodies.  They basically attack any recognized foreign body on a cellular level.  We do this through an immunoglobulin (IVIG) therapy.  And this is where it gets kinda cool.

OK, say you go to the local blood drive and offer up your arm to the phlebotomists for the grand good of all.  You might think that they take that blood, check it for scary viruses such as HIV and Hepatitis (here I remind you to never use this as a method of screening for a disease – it’s so totally uncool) and then simply dump it into some pathetically needy sick person.  But no, it’s way more interesting than this. 

Yes, they screen the blood.  Then they spin it down to separate the red cells from the platelets.  The red blood cells are what are often transfused to patients.  They call these PRBC’s, or packed red blood cells.  This greatly reduces the possibility of passing on viruses as there aren’t any leukocytes present.  This is the form that all of Kajsa’s previous transfusions have taken.

With the rest of the blood, they do many things, including helping burn victims.  Pretty nifty, huh?  But the part that pertains to Kajsa is the formation of immunoglobulin.  This is essentially the process of culling the antibodies from many people’s blood and creating this magical elixir of hard core, bad ass, disease fighting serum.  Some very diligent guy named Mike has created a site that tells more about immunoglobulin than you could possibly ever pretend to stay awake for.  It is; however, well organized.  So if you have a question in mind, you can likely find the answer there.

So there we were for six lovely days watching the sun rise and set while deliciously cool in our hospital room.  Almost makes you want to go too, doesn’t it?  But it wasn’t so bad. 

We got to enjoy the company of some of our absolute favorite nurses…so there was much chatting and gossiping to be done.  We made soooooo many crafts.  Let’s see we have a caterpillar made out of construction paper, googly eyes, and glued baubles.  We created a sunflower from a couple paper plates and glued buttons.  We’ve made baby birds, and magnetic photo frames. 

I read every pop-up book and/or board book until my jaw ached and memorized all of the Winnie the Pooh videos.  Furthermore, I am almost finished with a splendid striped scarf worthy of the pages of You Knit What?, for whom I play a stanza of Taps.  May their snarkiness rest in some semblance of peace.  You were my semi-secret bitchy outlet.

And after a week of transfusions, IVIG and avoiding residents with their undying desire to test for every disease known to man, Kajsa was deemed worthy of release.  She’s still having fevers, as her body is waging an all out war upon the Parvo (woof) virus, as well as whatever else may have been lurking in the wings.  I have been granted, once more, the honor of caring for my child.  Yippee.

We bolted from the starting gate at 12:30 this afternoon and are looking forward to grilling out from the comfort of our own home this evening.  Sigh.

So.  What did ya’ll do this week?

Back to the grindstone

Q:  Do you know what happens when you transplant a 22 year old kidney into the body of a three year old (complete with 3 year old sized bladder)?

A:  Nothing.  No dishes.  No cleaning. 

Just lots and lots of diapering.

                                             >>>…<<<

Kajsa for her part has been working pretty hard at potty training since leaving the hospital.  But she has to pee every 20 minutes or so. 

Did I mention that we live at least half an hour from anywhere.

Oh well.  No one ever said it would be simple.