sigh

Well, we’re still in the PICU.  Basically it’s just a matter of doing the Dopamine disco.  You see Kajsa’s blood pressure has typically been around 75/35 for the past several months.  (Amazing, really, considering that she was on three different B.P. meds prior to dialysis.)  And this is not a bad thing for a kid her age.  But her new kidney came from a 22 year old woman, and it’s used to a much juicier standard of living, so to speak.

So we’ve been artificially elevating her B.P. through a couple of measures.  Firstly, Dopamine. This is a drug that artificially bumps it up through, I believe, adrenal sources.  But don’t quote me on that.  The only thing I really need to know is what it does – not how it does it.

The other method being pursued is saline boluses (boli?)  This simply pumps up the volume, creating a physical challenge, thereby raising the blood pressure, as well.

The good news is that we weaned the dopamine least night.  And she only needed two boluses (bolum?) yesterday. 

The bad news is that she awoke today with a high fever – again.  So we’re changing antibiotics, once more.  Bleh!

Gee, don’t I sound like I know what I’m talking about?  Is there anyone out there who remembers when my idea of medicine was defined by sipping slippery elm tea and chewing on a licorice root?  Life sure can change, eh?  I guess kids’ll do that to you. 

Speaking of kids, Kajsa’s spirits are a bit low.  She’s just sooooo bored.  She was extremely excited to see our friends, Ash, Ember, Chrissy and Shaun yesterday.  But the hard part was that when they left, they took Chris with them.  So I’m trying to find a way to cheer her up.  I only left just now ‘cause she finally drifted off. 

We absolutely don’t need to anymore stuff right now.  I mean, you can send it if you really want to.  But don’t feel compelled on account of us.  Right now her big thing is simply loneliness and boredom.  I think we’re on the same page with that one.

If you want to send a card or even a CD of fun kids’ songs, let me know.  I’ll email our info to you.  And yes, Shelli and Miriam, I’ll be shooting something off to you as soon as I can.  Hopefully with this session, but I can’t guarantee it. 

But back to Kajsa:  You need not worry about rejection.  This is not among our current concerns.  And she’s on so many prophylactic meds.  We’ve got anti-bacterial, ant-viral, and anti-fungal.  I feel like at any moment Kajsa’s body will just up and reject my stinky old earth mama self.  Just kidding. 

But only kind of.  Any one out there ever read The Fifth Sacred Thing?  If so, you kind of grasp how oddly warped this situation might feel to me.  And while I know that it’s far beyond worth it, I am seriously aching to get back to our garden. 


I want to show Kajsa how to coax a ladybug onto her finger so that we can gently place it on a tomato stem.  I want her to get excited as we watch a zucchini grow in a bottle, and stare into the huge face of a sunflower.  This is what I yearn to spend our summer doing.

And so each night I make up stories for the sweetie about a little girl named Kajsa and her adventures in the woods with her dragon friend Chris.  And after she nods off, I daydream the next chapter for her…and of course for myself, as well.

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15 thoughts on “sigh

  1. Rowan – email me your info, if you will. We can certainly come up with some really fun kids’ music. And perhaps a little customized DVD? Does she have a DVD player in the room? I might be able to talk my girls (my hams, really) into singing some songs and generally acting silly for her. That might be fun?

  2. Plus, you have to let me know how to pronounce Kajsa’s name. I looked it up online, and it looks like some pronounce the way I thought (k-eye-sa) but others rhyme it with “Lisa.”

  3. I will be happy to email you our info just as soon as I can figure out how to find your email through my comments. For that matter, I need to get Miriam’s that way too.

    We do have a DVD player in our PICU room. But I think the other rooms are all VHS. We do; however, have the ability to play CD’s and borrow DVD players.

    Also, we pronounce Kajsa how I think you meant. The first syllable rhymes with eye. It’s that crazy scandihoovian thing, ya?

  4. I have not been by your Blog in a while… it’s one of those that doesn’t give me a “*” sign so I forget… but I’m concerned now to see Kajsa’s having some problems? I’ll have to make it a point to stop by when I have more time and catch up. You and yours will be in my thoughts.

  5. Hey Rowan, have you considered a Leapster or V-smile for Kajsa? I’ve heard some very good things about them. If you would like either one, let me know! Give Kajsa a big hug and kiss from Texas! Love, Dave

  6. i hope she continues to imporve! i dropped in to visit annika’s moms blog and she told us the wonderful news about the transplant, so i just wanted to give oyu a friendly congratualtions and wish you the best!

  7. I hope Kajsa’s BP will continue to rise & that the antibiotics will kick in soon…hospitals are not easy to deal with…especially for a child…wishing your family all the best.

  8. Just checking in. Ugh, I hope they get her bp sorted out soon, I hate not knowing what’s going on or what will happen next.

    Sending prayers and positive thoughts!

  9. OK, Rowan! We’ve got a movie and a cd all ready. I put my email above, once you have a chance to send out the mass email with address info.

    Hoping things are going well for Kajsa. Thinking of you.

  10. Ok, I didn’t think to check the comments – I wanted to comment but sometimes the baby does not allow for that.

    Here’s my email:
    knockedupvegan @ gmail dot com

    I really hope things are going well and that we’ll hear more good news soon. As for your daydreams – they sound lovely and I can’t wait for them to become real.

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