Routine ER Visit

Funny, but I'm starting to understand what the routine is for Matthew when he goes to the ER. He was there Friday, very early in the morning, for a fever. I didn't realize until the next day that maybe people don't understand why a fever is such a big deal. One of my bosses said, "Can't you just give him Ibuprofen?"

I realize maybe I never explained this before. So, I'll break it down. Because Matthew's immune system is so severely compromised, he is not properly equipped to fight off an infection. Any time there is a fever, that means the body is fighting an infection. So, when he gets a fever (it has to be 100.4 for at least an hour, or anything over 101.0) we take him up to the ER and he gets IV antibiotics, along with fluids. The dose of IV antibiotics is good for 24 hours.

Even if he doesn't have a fever, Tylenol and Ibuprofen are off limits all the time. The reason is that they can mask a fever, and since he can't fight infection like the rest of us, we need to know as soon as possible when he's fighting an infection. A masked fever could mean a costly delay in treating infection, and infection is the leading complication for Leukemia patients. It can be deadly.

So, we take fevers very seriously. And we take the no-Tylenol-no-Ibuprofen rule very seriously.

But back to the routine ER visit. I realize that sounds like a bit of an oxymoron, but I speak the truth. 3 times, we've done this now. Once Matthew has a qualifying fever (see above), I call the on call oncologist (say that 3 times fast) and let them know. They tell us to go to the ER, and they call the ER and let them know we're coming. While we drive, they are cleaning and sanitizing a triage room so that Matthew won't have to wait in the waiting room with kids who potentially have contagious illnesses. He comes in wearing a heavy duty mask on his face, and we sanitize our hands. They check us in right there at the desk, and then they take us back to the triage room. If there is a super long wait, this is where we will wait. It's our version of a waiting room.

Once they have taken Matthew's weight and vital signs, they move us to a regular ER room. Here, we always, without fail, become a teaching case. The resident and attending doctors come in, sometimes separately, and tell us the same thing - that they will take a CBC, give him IV antibiotics and fluids, and if his ANC is below 500, they'll admit him but if it's over 500, they'll send us home. Our nurse is always nervous, and her hands always shake as she accesses his port. (Friday it took 3 pokes. I was about to ask for another nurse) I am usually patient with this because I understand most nurses don't access a port on a regular basis. But sometimes, it becomes bothersome, to say the least. Once his port is accessed, they draw enough blood for his lab work (a CBC, and blood culture - plus one other, I think, that checks things like electrolytes and liver function). Then they hook him up to IV fluids and antibiotics. They always start with Rocephin. They told me once that it covers a lot of the likely culprits for his fevers, so they like to use that first.

Then we wait. For like an hour or two.

When they get the CBC results back, if the ANC is high enough, they send us home. It's always been high enough, but once it was borderline, and they let us decide. We opted to go home.

Once we go home, we are told that we can break the cardinal rule and give him Tylenol to treat his fever for the next 24 hours, because they have a documented fever and he has been given a 24 hour dose of antibiotics.

After the 24 hours has passed, if a qualifying fever returns, we have to start that process all over again. The second time, he's more likely to be admitted, though. We have never had a second time.

I always wonder what exactly causes the fevers. Sometimes, I think it's just how his body is reacting to the poison we regularly put into it. But, maybe it really is some kind of infection, and the Rocephin zaps it. I guess I'll never really know. I just thank heavens every time that it isn't something more severe. Saturday night, a friend of mine had her son admitted for C-Diff (which is AWFUL!) and a blood infection. These poor kids go through so much!

Matthew seems to be feeling better now. Friday, his fever came and went all day long, and I gave him the Tylenol so he'd be comfortable. Saturday, the fever was still there, but it was low enough to stay off the PCMC radar. It stayed between 99.5 - 100.1. It does that a LOT. Now, the fever is gone. Good riddance.

Last night, though, Matthew woke up with pretty bad bone pain. I always worry about it because there are some lasting effects that can exhibit this way. Vincristine (one of his main drugs) can cause a condition called foot drop. It's a form of neuropathy that makes it hard to control your feet. Sometimes the kids will fall down, or walk on their tippy toes from it. They put the kids into physical therapy for that. It hurts a lot, but is correctable. Still, whenever his ankles hurt (which is where the majority of his pain is) I worry about it. No need to go through any extra pain. You know? But there's also a condition called AVN (I don't know the full name, but the V stands for Vascular and the N stands for Necrosis, which means death). It's a death of the bones, if I understand it correctly, and it cannot be corrected. It causes pain for the rest of your life - again if I understand it correctly. I'm asking a lot of questions about it today, because of Matthew's pain. I doubt that is it for him, though, because it's caused by steroids, which he hasn't taken since November.

The bone pain is another one of those things that I stress over. Like fevers, there's a really broad spectrum of what could be causing it. And I think the chemo itself causes it. So, I struggle with whether or not to make an issue of it with the doctors. I don't want to overreact. It could mean more medicine, which he may not even need. But I don't want to underreact, because I want to get him help if he needs it, as soon as possible.

All in all, though, he's hanging in there this week. I think I've noticed that each phase gets a little worse with each appointment, and then when he has a break, he gets feeling better again. He has two more doctors appointments during this phase of treatment, and then we move on to Maintenance. I'm excited and scared all at once. Excited because he will only have to go to the doctors once a month, but scared because doctors will only check on him once a month.

In other news, the nurse said she will make sure he gets nominated for Make A Wish during our last appointment. I'm excited that he'll get that opportunity!

The stressful news of the week is the shortage of Methotrexate, which is one of the main drugs used in Matthew's treatment. It's used to prevent the spread of his cancer cells into his spinal fluid, which would quickly spread it to his entire central nervous system, including his brain. It's also used to slow the growth of white blood cells, which is where his cancer is at. Since white blood cells grow so fast, having a delay in his Methotrexate doses could mean relapse. We're praying they sort it out quickly. Right now, the clinic says they have enough of it stockpiled that they don't believe they will run out.

Also, back to my bald barbie post, which was about a month ago. I found out this morning that the makers of Bratz are making a True Hope doll , which is set to be released in July of 2012. They will donate a portion of the proceeds to a children's cancer research hospital in California. I'm really glad to see it. I think it's the start of something that could make a big difference in these kids' lives.