Autoimmune Hemolytic Anemia

Hi guys,

Well, Sarah and I were just saying how lucky we'd been that Ethan hadn't been admitted *overnight* for any major medical issues since he was discharged post transplant last year. Well, the fact that we were in the Doernbecher ER at the time, should have been warning enough not to tempt fate.

Late this afternoon, ethan's daycare provider call us to say that he appeared jaundiced. And sure enough when I got there 30 minutes later, he was a little yellow, and his eyes were a little yellow, and his lips were a little pale. So we talked with his docs and they said to bring him in so they could have a look.

You know what they say, just because you're paranoid doesn't mean they aren't out to get you? I guess we weren't too paranoid...

Ethan's been admitted to receive treatment for hemoplastic anemia, essentially he doesn't have enough red blood cells right now. There are a few things that could cause this, something to do with the transplant, may mean that his body isn't producing enough blood, or blood cells are getting torn up as his body attempts to fight antibodies that have built up in his system, or he might have a bacterial infection (c-diff), or he might be loosing blood somewhere.

At the moment, the docs are looking at the antibody issue and the c-diff as the likely culprits. As I understand it, the antibody's are formed in response to drugs like the Amoxcycillan that he just had for his ear infections. I think what happens is that the antibodies attach to red blood cells and then the white blood cells attack the red cells because these antibodies are attached.

The C-diff is a bacteria that forms in his gut in the absence of other bacteria. They say that it is sometimes found in immune suppressed patients and sometimes develops in patients that are coming off antibiotics.

So, the deal is that they're running some tests and we should know more in the morning. In the meantime, they're going to give him some blood overnight. If all goes well, we may be here two days or so while they get things under control.

Coincidentallly, Ethan and I were actually scheduled to be up here tomorrow anyway for his enzyme, so our schedule hasn't changed that much!

By the way, a note about the new blog site. I'm hoping to stop posting to the caringbridge site and start posting here. This site has a few advantages over caringbridge: it'll be easier to upload pictures and video on a regular basis, and we can respond to comments on posts directly. So often, someone will leave an informative or supportive post, or will have a question about Ethan and we haven't been able to reply to that person very easily on Caringbridge. Hopefully, we'll be able to do so here.

I've transferred over all of the posts from the old site, but unfortunately, there's no way to transfer the guestbook comments. So we'll leave that site live so we can go back to those.

And finally, I think Sarah and I have figured out how to explain MPS to Caleb. We've been struggling with this for a year, how do you explain a complex, multi-system, degenerative genetic disorder to a five year old?

Here's what we figured out. Imagine your body is a house. Every time the trash can fills up, you take the full bag out and put it on the floor in that room. Before too long, the room would be full of trash bags, and you wouldn't be able to get around. That's a pretty good analogy for what's going on with our busy little guy.

Thanks for being there. We'll write more as we learn more about Ethan's condition.

-Todd, Sarah, Ethan, and Caleb

Comments

Erica said…
Another way is when doing construction you take out the old materials such as drywall and etc and in order to put in and up hte new materials - well in MPS instead of recycling adn replacing these materials you are essentially building over the old foundation and eventually damage accrues due to foundation weaknessess.
Many prayers,

Erica
Anonymous said…
Hoping the jaundice clears up easily. Would acidophilus help? (You probably thought of that already)
Wishing you all a pleasant fall season. If you'd like to get the kids together again we'd love to see you all. If your schedule's too intense we understand that too.
Marion& Cory