Sitting here in Limbo

Yep, we’re still / again (and again and again) in the hospital.  We we’re going to go back to the RMH (home away from home) today since nothing is growing in any of the numerous random fever related invasive tests they’ve done lately.  But just as we were about to walk out the door I was informed that Kajsa needs another transfusion. 

It’s so odd how much the kidney regulates within the body.  Even though red blood cells are produced in the long bones’ marrows, the kidney is in essence the brains of the operation.  And so far, the introductions, as it were, have not been made.  I asked one of the Nephrologists if there were cases of them never jumpstarting this process.  She informed me that while that didn’t happen, it could take along time for her body to begin producing rbc’s.  So this might simply be the second in a string of transfusions.

The other side of this is that Kajsa has to have blood that has been exposed to relatively few viruses, and is therefore rare.  So when they put in the order for blood for her this afternoon, the search was actually international.  Fortunately, they located some O+ CMV within a couple of hours.  So we should be able to leave late tonight to head over to RMH.

As for when we will be able to return home, no one knows.  I never thought I’d miss that weird little town, and I guess I don’t.  But I do miss my husband, my garden, and the ability to eat off of a plate – rather than a Styrofoam container.

Kajsa’s spirits are so much higher than mine.  The hardest part of dealing with her, right now, is keeping her from jumping off the bed and onto her little head…concrete floors and all that, you know.  I’ve now taught her a lovely new song about doctors and monkeys jumping on the bed.  I should have known that this, like everything else would have a paradoxical effect.  She now giggles manically as she hops, jumps, and does summersaults across the tiny hospital bed. 

Crazy monkey.

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ho-hum

Well the Ronald McDonald House is a great place.  Unfortunately, we aren’t there today.  Yep, we’re back in the hospital for a couple of days.  Just in time to watch the fireworks from a second floor window.  We’re slowly collecting hospitalized holidays.

Fortunately, Kajsa’s issue right now has as much to do with being on strong drugs with a normal kidney as anything else.  You see, she has a drug called Cellcept, which is notorious for causing diarrhea..and boy, did it work on her.  So she go super dried out this weekend.  This created an acidotic state as well as driving up her creatinine.  And without the benefit of dialysis, she simply acted like any other toddler – and got sickly.  So her we sit, bored (me) and sleepy and grumpy (her). 

But we aren’t even giving up our space at RMH, since they hope to have us out within a couple of days.  I certainly hope so, as my folks fly in on Thursday.  Right about now, I sure can’t wait to see them.  Maybe I can even be babied a bit for a little while ie: shower, sleep, and let someone else change a diaper.

If we get a chance, we’re also going to try to drive up to our home this weekend.  Yippee.  We’ll see.

In the happy news, Kajsa had what, for her, is pretty much her first bath on Sunday.  we climbed in together and played with bubbles, splashed and really, thoroughly washed her hair.  It was delightful.  She gets de-accessed on Fridays, so we’ll be able to have bath-time fun each weekend.

I’ll update asap.  Thank you everyone for your happy wishes and good vibes.  It always feels so great to come here and see them cheering us on.  I’ll give Kajsa extra hugs for all of you.

Exhale

Well, we’re at The Ronald McDonald house now. And are we ever reveling in the abundant space! I never knew a two bedroom apartment could fell so spacious. We have, to date, played countless games of hide and go seek. This is, by the way, a game that Kajsa has yet to grasp the concept of. But, she’s enjoying it anyway. She ALWAYS hides in the middle of the bathroom, and comes running as soon as she hears, "Ready or not, here I come."

But it’s a fantastic way to get her active again. A month in a bed undid much of her physical therepy. When we’re out, she only limps a few steps now before she’s tired and needs to be carried. Yep, I’m carrying a toddler everywhere. Gee, could I use a massage right about now. Too bad my massage therapist is off earning a paycheck elsewhere.

Speaking of, Chris is down for the day. It’s fantastic to see him! It’s been two weeks, and I missed him so much. I’m hoping that we can get out to a nice park – with water – later in the day. This’ll have to be after the weather cools somewhat. It is so unbelievable hot here. UNBELIEVABLY HOT!

Also, I get the stupendous luxury of hitting a grocery store. And you know what I’m not going to buy? Boca Burgers. Dear heavens, am I sick of them. Did you know that I have had a Boca Burger every single night for a month? Being a vegetarian in the hospital is a slow culinary slide into death by boredom. I plan to make many gastronomic delights during our time here. I’m even planning a nice picnic for the fourth, as Chris has that off, too. Ideas, anyone?

Oh, did you want to hear about Kajsa’s health? It’s great…relatively speaking. She responded well to the OKT3 and has now left it for oral anti rejection meds, which appear to be working. He creatinine is down to 0.5 again and holding. We have labs drawn three days a week, just to make sure. Our biggest challenge, at the moment, is simply keeping her uber hydrated. As in 2 liters a day hydrated. That big ole kidney simply needs lots of juiciness. Can I get three cheers for the g-tube? I have her drinking lots of water, too. Maybe we can even set up some good habits for the kiddo. What a novel idea.

Kajsa can leave the RMH with a mask and tons of sunscreen. We still don’t have a car in Phoenix. But my parents are flying in on the 6th and I plan to do lots of fun stuff with them. It needs to be mostly away from people so we’ll visit the zoo and the desert botanical gardens; stuff like that. I know that our life is still a bit narrow, but just these few new reintroduced options have made life so much happier and relaxed.