Sunday, June 26, 2011

And again...

Caleb is sick. But this time I'd be surprised if it was a bug. Here is how it all happened:

On Monday I talked to the GI doc and we decided that the prednisone wasn't helping, so he got his last dose on Tuesday and we started a new acid medicine (I'm not sure why we started the new med...it doesn't make sense that it would help...it frustrates me).

Tuesday and Wednesday Caleb ate like a pro! I've never seen him eat like that before!

On Thursday, he refused to eat any solid foods at all, but he was still drinking plenty of pediasure and acting like himself, so I wasn't too worried.

On Friday the solid-food-strike continued. He was still drinking enough (but really, does he ever drink enough? No.) so I wasn't too concerned, but I decided to call the pediatrician just to be safe. I talked to a nurse who said to wait it out and call the GI doc (who was out of the office for the rest of the weekend).

On Saturday he acted normally (aka, not eating) but in the evening he threw up a significant amount and then fell asleep in the living room a few hours before bed. Then he threw up again. And again. Then he said, "all done." And threw up again. Nate and I cried. And we put him to bed.

That brings us to today. I woke up early for church (it was Nate's turn to stay home with Caleb, since Cal hasn't been to church since he started on the prednisone, because it weakens the immune system and he could get very sick...little tangent)...I woke up early for church, and I heard Caleb heaving in his room. He had no energy to cry (makes me wonder if he heaved all night long without anyone to comfort him. Sad.). So I patted his back while he retched and retched and retched. Nate slept on a blanket on the floor so Caleb wouldn't be alone. They were still there when I got back from church four hours later. Every time Caleb would drink water, he would throw up. If he didn't drink water, he would dry heave. And he would lay listless in our arms. He threw up so much that the blood vessels in his face all came to the surface and he had red spider veins all over his little shallow cheeks. So we brought him to the ER.

At the ER, they gave him an IV and took blood for tests. I insisted on doing the RAST allergy blood test (which they had never heard of...wow...I never thought I would need to have such unique medical knowledge). He would need the RAST testing done eventually, so I thought, "you might as well only poke him once!" Thankfully they obliged, even though HE RAN OUT OF BLOOD!!! Seriously. The vein didn't collapse, they could still flush saline into it, but there was no more blood to come out of it. It was sad. They went to great, terrible lengths to get every drop of blood possible. Then they gave him 100 ML of fluids.

Then the blood tests came back saying that Caleb was quite low on electrolytes, so they tried to give him 50 ML more of fluids, but the IV went bad. So, they had us give him 2 oz of pedialyte, which he scarfed, and when he didn't throw it up they sent us home.

Then he slept for two hours on the living room floor, he drank a few more ounces of pedialyte and a bit of raspberry sherbet, and we gave him a bath and put him to bed early. And he fell right asleep.

The cause of his ailment is one of three things: 1) a bug, 2) abruptly stopping prednisone, or 3) his EE is just plainly out of control.

It's likely not a bug, because he doesn't have diarrhea. It's likely not from the prednisone, because he was on such a low dose that the GI doc said that it wouldn't hurt to stop it abruptly.

So, that leaves us with lovely door number 3!! And what have we won, Stan!? A whole, new path that no one ever wants to go down! But I'm ready!

It's cruel to let a child suffer like this. I can't handle it any more. Caleb is obviously in pain and we can't expect it to go away until we get rid of the allergens in his diet. So, tomorrow when I call the GI doc, I will demand that we start Caleb on an elemental formula, that we have access to NG tube accessories in case he doesn't drink enough of the nasty-tasting formula, an appointment SOON with an allergist (I made an appointment with one in OCTOBER), and knowledge on how to do the elimination diet. Yay (not).

It makes me want to cry thinking that Caleb may never be able to have ice cream. But it's worth it to make sure that he can live a pain-free life. People these days find too much joy and fulfillment in food. Caleb will just have to find it elsewhere. And that's the diamond in the rough. We just have a lot of years filled with a lot of rough.

It's hard to say that All Bad Things Must End when your child is diagnosed with a chronic condition. The condition won't end in this life, but the pain will. I look forward to that.

5 comments:

Katie B said...

I can't even fanthom how hard this must be for you guys. There's probably going to be a lot of trial and error before you figure out how to best treat Caleb's EE. What a poor little guy. You're doing your very best, though, that's all you can do.

Eugenia Xie said...

I'm so sorry, Anna! I will be praying for you guys.

emilia. said...

i love you so much!

Natalie said...

SOOOOO Sad. I hate the retching more than anything.

*Alice Anne* said...

I'm so sorry ...poor caleb has gone through so much!