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