Thanks everyone. It’s so nice come here and see everyone’s responses. I wish I could make it over every day!
And Jen, yep. we were informed that Kajsa is entitled to a Make A Wish whenever we want to use it. We might wait until she’s old enough to remember it…or perhaps now, when it’s so deserved.
Kajsa’s sleeping in today. It’s 11:40 right now. She hasn’t slept this long in weeks. But then again, she was up until almost midnight last night DEMANDING crayons. Wears on both of us, I suppose.
Good news is we should be sprung to RMH by Friday. Just in time for the fourth. Maybe we’ll try to find a well ventilated outdoor celebration – or barbeque some tofu. I know RMH has grills on site.
What a change this will be…a true sigh of relief.
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?
You’ve probably noticed that it’s been a while since I had the time to get over here to blog. And unfortunately, there’s a really good reason for it.
Well, good might not be the most appropriate of words.
The fact of the matter is that Kajsa is a very strong girl with an equally tenacious immune system. And although this sounds fantastic, it is, in fact, a very bad thing for a transplanted organ. So the chickadee is going through what is called an acute allograft rejection. And yes, it sounds almost as frightening as it is.
Basically, Kajsa’s body has (despite strong immunosuppressants) detected the foreigner and is attacking the daylights out of it. Which makes me say crap…a lot.
Yesterday involved a lot of crying on my part. No, I’m sorry. That was the day before. It really does run together. I realized this morning that it’s been 2 weeks since we came to the hospital. Unbelievable.
Well, anyway, we were finally able to get Kajsa’s BP under control just to have her start spiking these outrageous fevers. Then her belly got huge. Huge as in carying quadruplets proportions. It frightened me. It frightened her nurse. And it frightened the Nephrologists. It also made everyone move very fast. So did the impact that it had on her ability to breathe. So we ran off to the PACU where her kidney was biopsied and her abdomen was drained — of 750 ml. Then we returned to the PICU to await the results. Those, being the acute rejection of the blood vessels leading to the kidney.
The good news is that there exists a bigger, better way to fight her body. It is called OKT3. This immunosuppressant is yet another way to attack her T-cells. The hard parts of this process are these: It makes patients very, very sick. Imagine the worst flu you’ve ever had. And then imagine just a little bit worse. That’s the common response. The second is not so much a side effect as simply the facts. Kajsa is temporarily devoid of one of her body’s primary lines of defense, the T cell. So she is incredibly susceptible to any illness right now. Especially harmful is Mono, as this could elicit in her body a lymphocytic cancer. So we are taking extreme precautions. For example, I am going to take a shower after touching this very public computer. Then I will scrub with anti-bacterial soap before slathering alcohol foam all over my arms. This is so that I can hang out in our PICU room and be mom.
But, Chris was able to come down today. So I get a break, and he get’s what he needs the very most…the ability to be there as Kajsa succumbs to the rigors of this highly invasive therapy.
And she has. She began her first treatment this morning. And she’s pretty pitiful. But she’s also getting a good amount of rest, which is one of the most beautiful sights imaginable right now. Our social worker called Chris’ work to let Human resources know just how serious this all is. They were, of course, very understanding and accommodating. He can stay as long as needed without worrying that his job might be endangered. So as far as that goes, it’s just a matter of seeing how long we can stretch a dollar. I’m sure he’ll be heading back after the weekend. But this at least gives him time during the hardest part.
So we’re in the PICU for the 10-12 day treatment. Then we’ll see where we stand. So yes, I will accept the ‘relievers of boredom’ from you who have offered. Because, man, is she bored. I am too. But at least I’m old enough to know why, and to see that there is a greater purpose to our odd circumstances. Furthermore, my boredom isn’t peppered with pain that needs distraction.
So it is with great faith in people’s ability to not take advantage of personal information that I release ours. I thank you in advance for any cards, photos, and/or kind words of encouragement. They may be sent to:
c/o Phoenix Children’s Hospital
1919 E. Thomas Road
Phoenix, AZ 85016
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.
So I can only get a few minutes in today. But I just wanted to let everyone know that Kajsa is continuing to improve. What a flippin’ trooper. I am just so amazed by her sheer strength of will and how beautifully it translates to her ability to handle physical stresses. Kids are just so unbelievable sometimes.
But inside were all sorts of treats. Firstly, it helps to have a sis who owns a salon. We got organic shampoo, conditioner and lotions. Mmm. We’ll be the best smelling family in the aquarium! Furthermore, her salon is upstairs from a health food co-op. So we have boxes of soymilk, org juice and all the super natural junk food a new to eating kiddo could dream of.
But the best was the rest of it. Kajsa is now the proud owner of her own tabletop puppet theatre. And she has soooo many finger puppets and one unicorn hand puppet. This coordinates so well with the fish puppet that one of her nurses bought for her at the gift shop. So now, Kajsa can be entertained and I no longer need worry about my brain disintegrating from lack of use.
My folks sent a great care package, too. Among the items were books for each of us, and more smell goods, as well as Kajsa’s very first game of UNO. It’s Winnie the Pooh and super cute. I spent a good half an hour just trying to get her to fully grasp the concept. It’ll still be a while. But I sure don’t mind. We were in the middle of reading the book about the gingerbread baby when her dinner arrived. Yummy pizza. She smacked and gulped and made all sorts of new wonderful noises. We’ll work on manners later. Right now, I’m just so happy to indulge her every gastronomic desire.
Lastly, we received a lovely package from Chris’ Aunt Wynne and Uncle Rick. I hope that they’ll be happy to know that I promptly changed her into the adorable gown. She now, truly is the darling of the ICU. I even put up her hair and snipped off a bit of the package ribbon to tie a cute little bow around the pony tail. And as for that kitty doll house, I never would have thought to buy her one of those, but it was a huge hit. She’s not stopped playing with it since I pulled it out. We put her table up high enough that she can see into it, and she’s just delighted.
You all are so thoughtful. And with all of these new came pictures and cards. What a neat idea. I have now put up photos of family members as well as the letters and cards. So Kajsa is quite literally surrounded by smiling family members. It’s pretty cool. In fact, it’s perhaps my favorite part. It makes this bizarre environment feel so much more like a temporary home, rather than just the fish bowl.
I love you all.
How great it is to come back here a couple of days later to find that so many people have expressed their joy. I love it!!!
Kajsa continues to do fairly well. It’s kind of a ‘several steps forward one step back’ type of situation right now. We left the PICU yesterday after waiting a day and a half for a private room. Finally, after arriving in what I thought would be our destination, I started moving in. I put our toiletries on the shelves and set up my “kitchen”. Oh yes, this consists of hoarded packets of mustard, crackers and my Celestial Seasonings Emperors’ Choice tea that I just couldn’t handle hospitalization without.
I then commenced to chat with Chris for far to long about as many non-medically related subjects as possible, until it was waaaay past both our bedtimes. I remember when we first started dating. We could spend hours on the phone talking about absolutely nothing. These days we can go a whole evening uttering only the occasional comment. But when we’re separated, it’s just like old times. So any way, it was about 12:30 when we finally said our goodnights.
I drifted off to sleep and began dreaming of my mom.
No wait that was someone gently shaking me as they said “Mom…Mom.” Confused, I came to wakefulness to find myself blinking up at a resident. “Mom,” she said. (They always call me Mom.)
“Mom, we’re going to have to move you back downstairs to the PICU. Kajsa’s blood pressure has gotten really low, and we’re not equipped to administer Dopamine.”
Still blinking, I began packing up the lotion, toothpaste and treasured katsup packets – then started reloading her bed to be rolled the back way to the service elevator and down to the room two doors down from where we’d been such a short time ago. It was a veritable parade of Mickey Mouse medical masks and IV poles. As we passed our former abode, I noticed that they’d taken my drawing of a huge kidney off the glass door that now looks in to a ventilated teenaged girl. But the vibrant “Welcome to the Family” was still rainbow bright and cheery.
As we turned the corner, the new window read, in bright bold colors, “WE LOVE YOU KAJSA!” complete with love replaced by a pretty pink heart. That’s when I got weepy. They have all been so sweet. There is nothing in the world like the PICU of a children’s hospital. You wanna see dedication and unconditional love – you need look no further. What great folks.
So there we sat. Kajsa went back on the Dopamine. And the world was properly ordered once more. Then around 7:00 she spiked a 102 fever, which we’re hoping is only a UTI. So it’s prophylactic anti-biotics for the kiddo.
But you know, as dreary as that all sounds, you’d never know it from hanging out with my gal. Sure she’ll tell you she feels “yucky right now” and she’s a bit frantic whenever the Morphine wears low. But despite all of that, she’s still filling the walls with her 3 year old drawings, trying new foods (wonder of wonders), and dancing in her seat while singing her ABC’s at the top of her lungs.
So yep, Kajsa’s recovering. And it’s slow going. But hey, it’s going. And knowing Kajsa it’s only going to keep spiraling out of control. Watch out everyone, here she comes!
I’ll be back soon. It’s just so great to hear from you all.
Hugs and much love.
As many of you know by now, Kajsa received her new kidney on Saturday morning. And I am extremely happy to tell you that she is doing unexpectedly well.
We should be leaving the PICU sometime today or tomorrow. We will then spend a few days on the floor in isolation. From there we’ll be at the Ronald McDonald house for about a month.
I’m writing this from the hospital library. Otherwise I’d include a photo. But just know that she is looking better than ever.
She was permitted food this afternoon and actually ate an entire bag of crackers. This previously unheard of amount was treated by her as though it were old hat. What a goof.
Also, for what it’s worth, our computer is in route to Gateway for repair. I’ve gotten all of your comments and wished quite desperately that I could respond. It is always so hearting to know that others are thinking of our family and wishing us well.
I’ll have this be a short post. But know that I plan to share more of the story soon. I’ve missed you all. Thank you for being there…even when you couldn’t see that I was.
Hugs to you all!