Saturday, May 13, 2006

The Great ITP Adventure, Part Deux

...So where was I? Right, the bone marrow biopsy on Tuesday. Luckily, the doctor and nurses allowed us to be in the room when Eden had the biopsy done. Lucky in a way--it was ten times easier to watch a nurse punch a monstrously large needle into Eden's hip than it was to try to comfort her as she lay screaming before the sedatives kicked in. Her eyes were two power drills of parental guilt; you could see the Why? written in big bold letters in her eyes before she crashed out. Oh, did I mention why she was crying so much, apart from the obvious? Because she had to go for SEVEN HOURS without any sustenance prior to the biopsy. I can't even go that long between meals, and I'm not on the two hour normal feeding schedule Eden has been on since birth (although I'm close, which probably explains a lot of the not-so-svelte figure I cut these days).

The biopsy came back negative for cancer.

The results were almost an afterthought. Sarah and I were so focused on getting Eden through the seven milk-free hours and, once it finally rolled around, getting through the biopsy
that we almost forgot the whole reason for the agony in the first place--to try to find the answer to Eden's blood problems. The lack of an answer from the biopsy was an answer itself; no cancer narrowed the possibilities to basically three options: ITP, a more simple viral infection, or internal hemangiomas.

To try to figure out which it was, Eden had to get a transfusion of platelets. The doctors would then test her blood shortly after the transfusion and again the next morning (Wednesday), and compare the two. If her platelets the next morning were as high or higher than they were right after the transfusion, chances are she had just had a virus at some point that made her bone marrow goofy enough to stop making blood properly for a bit, and her body just needed some help to catch up with itself. If her platelets were down or not as high as they should be, however, then something was actively eating the platelets.

So she got the transfusion and her platelet count jumped up a bit, but a couple hours later we noticed blood in her diaper. We called in the nurse, who called in the nighttime attending doctor, who decided Eden needed another round of platelets. After the second transfusion her platelets should have been up around a million (which is bad if you're grown up but is apparently okay if you're a baby--yet another benefit we lose when we get old), so we had high hopes for Wednesday morning's blood test.

Her platelets the next morning were at 43, 000. Which isn't very close to a million, for those of you who struggle with math. This meant Something Bad was eating her platelets like candy. This also ruled out the basic viral infection, and left two options: ITP and internal hemangiomas.

Hemangiomas are something you're just going to have to google for yourself, because I can't really explain them and trying to would take too long, be full of errors, and sound generally ugly. You might actually come out stupider after my explanation; suffice to say you wouldn't want to decorate your house with them. The treatment for internal hemangiomas is apparently the same as for ITP, except that in extreme cases chemotherapy has to poke its nose in. We were holding our collective breath for ITP.

The doctor scheduled a set of ultrasounds for Wednesday to search Eden's torso and head for any hemangiomas, which gave me a funny feeling; eight months ago we were using ultrasound to look at her outsides and now we were using it to see her insides as well. And, in case the milkless Tuesday morning wasn't fun enough, we had to deprive Eden of nourishment for four hours prior to the ultrasounds, to be able to get clear pictures of her internal organs. Eden got through those four hours like she got through the seven hungry hours the previous day--by sleeping almost non-stop. I'm convinced it was a conscious act of will on her part, because there was really no other explanation for it; she can't make it at home past 2.5 hours without screaming.

The ultrasounds didn't show any hemangiomas (although they did turn up an enlarged right kidney--this is a bonus her body decided to throw in, as the doctor believes it is unrelated to her ITP. Probably a kidney infection, or possibly some-body-part-A not connecting properly with some-other-body-part-B, which could cause waste from her bladder to backflush into her kidney. Or something. The doctor didn't spend much time on the kidney ailment, other than mentioning that we can't do the normal test for this problem--which involves a catheter, a whole lot of dye, and an x-ray to see if any dye meanders from bladder to kidney--because her platelets and white cells are too low. So that'll be a fun game for later.), so the only option left was ITP.

ITP, in doctorspeak, stands for I don't know what The Problem is but I know bad things are happening. Just kidding! That's just what it means to me. It actually stands for Ideopathic Thrombocytopenic Purpura, and is usually caused by a virus or vaccination tricking the blood's white blood cells into thinking the platelets are the bad guys. The white cells give the platelets little dunce caps, and the spleen then throws all the dunces out as they filter through.

Hmm, let me think about this. It seems like Eden got her first batch of vaccines just a few weeks ago...

Anyway, the treatment for ITP is a transfusion of immunoglobulins, which various doctors and nurses called immunoglobulins, gamma-globulins, and IVIG. IVIG is easier to type and uses capital letters, so we'll call it that. Eden got the IVIG (so much fun to type--it looks like ancient Roman) Wednesday night into Thursday morning, and by that morning's blood test, she was up to 80,000 platelets, which was only half of the normal minimum but was still a weekly record for her. 80,000 platelets was good; 80,000 platelets meant the IVIG was working like it should. 80,000 platelets meant we could take her home, which we did later that afternoon, once we had talked to the doctor.

And now we're home. Eden's not quite out of the woods yet; we have to take her into the blood clinic every Monday for the next couple of months to check her blood levels. The IVIG only lasts four to six weeks, so we have to watch for her platelets to start declining again; if that happens, it's back to the hospital for another transfusion. And her white blood cells are still much lower than they should be and no one's really sure why. And she still has an enlarged kidney that had to take a number after the ITP but that we'll still have to handle at some point. All of that sounds worse than it is, though; we're home and Eden is on her way to being a normal healthy baby.

There are, of course, so many things that happened that I forgot to mention, like having to give Eden sugar water during the ultrasounds to keep her relatively still (thus starting the inevitable decline into sugar addiction that the rest of the family suffers from), or Molly and Chach coming up every day and taking care of us (and Molly staying all day every day, giving us the physical and emotional supprt we so desperately needed), or all the calls and thoughts and prayers we received from everyone over the week, or the million other little things we swore would be burned in our memories forever and have already started to forget. Maybe they'll be related down the road, as the situation arises or as they come to me.

All of that to say that it was a long week, but Eden came through it like a champ and will hopefully be all better in just a few more weeks. And there's nothing like a stint in the hospital to build up the over-protective-parent muscles.

And if I haven't said it yet, thank you. If you're reading this, then you offered up a prayer for Eden and, in the end, that's what got her (and us) through this and will ultimately get her better. So...thanks. And keep em coming.


Jennifer Baber said...

Thanks for the update. I am glad she is doinig better and you get to be at home with her. I will continue to pray for her. Is there anything you need besides prayers. Please call me with anything . . . I'll be there!

Mike, I am always impressed with your writting ability! You've got a gift!

« Joseph » said...

I just finished reading all the updates with tears in my eyes. I am so thankful that Eden is doing so much better. And that you guys made it through as well, I'm sure it's been incredibly tough. Joe and I will continue to pray for all of you and as always you are in our thoughts. We love you! Rhonda