But it is getting better. Right now my nerves are just about shot…and not because Kajsa’s having a tough time of it. In fact, quite to the contrary, she is bored, bored, bored. And guess who gets to pay the price. She thinks she’s well enough to play, and yet she cannot leave our room. This generally means that I, too, cannot leave our room. Her general anxiety has simply gotten to very high levels (decibels). If you think I can do dolphin interpretation when upset, Kajsa can communicate with the moon. I wouldn’t even be here right now except that Jamie from Child Life Services came in today and gave me the old heave-ho. They really should call them Parent Life Services. If it weren’t for those folks I’d have no hair left.
But enough about moi. How the heck is Kajsa doing anyway?
Kajsa rocks. So do the nephrologists. After they began waging war upon her leucocytes, Kajsa had a couple of very painful days. This involved a lot of barely conscious moaning and general pitifulness. Fortunately, we live in the land of morphine. Chris was here for those days. So as a tribute to Kajsa’s druggy state, I took some time to run to the mall and buy a copy of Alice in Wonderland. I know; I have a truly sick sense of humor.
Each day has brought Kajsa back to herself. And on day 5 we were moved up to the floor. We have a double room all to ourselves, complete with everything we could ever want - short of privacy and health.
Kajsa’s creatinine continues to drop day by day. It peaked at 3.9 and was 1.4 yesterday. Furthermore, her belly is returning to its former state. So the OKT3 appears to be working. We’re conspiring daily with Ami from nutrition to balance her fluids in the hopes that once this course is over we can transition directly to the Ronald McDonald House. We’ll be isolated there, too. But at least it’ll be a change of scenery. And I can’t wait for the privacy! I didn’t realize how horribly antisocial I am. But I would love more than to hide alone in a dark cave for a few days right now. Jeez, do I demonstrate the perfect blogger profile, or what?
The discharge should coincide with my folks’ arrival in Phoenix. I am aching to see them right about now. There’s nothing like having a sick kid to make you miss your own Mama and Daddy. We’ll be there for a month or more as we check Kajsa’s blood 3 times a week to make sure that we can breathe a bit easier.
And I know that it’s a dangerous habit around here, but I can’t keep myself from counting down the days. Right now we’re at 5 or 7 depending upon who you talk to.
Oh. I almost forgot. I promised an anecdote.
The day before we began the OKT3 we had been brought back down to the PICU (we’re actually up to 7 rooms this stay). In the rush downstairs, complete with biopsy, drain and maternal meltdown, I’d forgotten a couple of items and a PCT was sent along with them. As he stood there watching Kajsa absorbed by Cinderella for the 432nd time he asked if we’d ever been to Disneyland. “No,” I replied. “But we are thinking of having it be our Make A Wish.” He encouraged me greatly in this and regaled me with tales of his daughter’s love of the place. Then he asked Kajsa if she liked “The Princesses”. Of course, she said yes. What 3 year old Cinderella addict wouldn’t? So he asked her which princess was her favorite. To which my girl, without missing a beat, looked up and replied, “Mom.”
Yes, we can all melt together now. This made the whole day fade away. I am my daughter’s favorite princess.
You know, there are many more things to tell – when I have the time. Honestly, this incredibly intensive time together has had its share of belly laughs, too. It’s not all freak outs and beeping pumps. I guess it’s one of those things you can chalk up to becoming stronger. In fact, when I was talking to my sister, Heather, today she told me she likes me better since I’ve been with Chris. And while this is a testament to my patient/take no crap husband, there’s been more than just his influence. I think he’s a better person now, too. I think we all are. I mean, how could we not be?