Alyson’s Journey

I typically follow “the rules”. I exercise, eat well, buy organics, put Alyson through all these treatments, leave Bradyn at home to comply with the new “flu guidelines” at Clinic and so forth. More to the point of this discussion, I am very patient when it comes to needing to stay in the hospital.

“The Rules” of neutropenia during leukemia treatment currently means watching your child like a hawk and calling at the first sign of any fever. Which is how we came to be at the hospital. Once admitted, the Big Three have to be met. (For those of you who haven’t heard it a million times from me: no fever for 24 hours, negative cultures and counts on the rise.) An additional unspoken rule is that a certain minimum ANC must be met. For some situations, it’s 100, 250,  500 or whatever. Irregardless, Alyson’s 22 of today doesn’t make the cut.

Other information leading up to today:

• There have been several confirmed cases of H1N1 on the floor.
• One of those patients is next door.
• Visitors to that patient clearly don’t understand the rules about isolation.
• There are other scary infections to be picked up in a hospital.
• Alyson has been in the company of more people over the last week than in the past two months.

Medical Status:

• Alyson hasn’t had a fever for almost 72 hours.
• All blood cultures have come back negative.
• Her monocytes are way up.
• She appears to be making platelets again.
• She’s been at home for weeks at a time with an ANC just as low, if not lower.

To sum up, I’m scared. I don’t feel that Alyson is safer here. I do feel that she’s been exposed to all the germs in our house. My discussions with the docs on the floor haven’t been reassuring. They have placed her in a category and are treating her by the generalities. There is no written policy about when to send someone home. I know she isn’t currently sick. But she could easily become sick if we stay here.

And so I called the insurance company this evening to check if our coverage could be effected if I decide to take her home. It isn’t. To quote:

If your coverage would normally pay for the visit, then it’s still covered. Whatever happens between you and the hospital is between you and the hospital. It doesn’t have to do with your insurance coverage.

Yes, I got the representative’s name and the call’s reference number.

Here’s our current logic:

1. The doctors are concerned that she could get bacteremia and go into septic shock before we could get to the hospital.
2. This could occur if:
   • we stop antibiotics and any bacterial infection steps up
   • she gets a new infection and it isn’t treated promptly
3. Therefore, if she isn’t currently infected with a bacteria (re: negative cultures) then stoping the antibiotic should have no effect.
4. Stopping an antibiotic, no matter how certain I am, is much less dangerous while IN the hospital than once you are sent home.
5. If she runs a fever due to a new infection, we would most certainly be bringing her straight to the hospital – just like we always have done. (Read: If there’s a defined reason to have her here, then that’s the safest place for her to be.)

So John and I decided to refuse the antibiotic treatment this afternoon against the doctor’s advise. Our nurses are aware of our reasoning and decision. They will awaken me tonight if there is any change in Alyson’s condition. I’ve given them permission to restart the antibiotic if anything changes. Needless to say, the doctor-in-charge isn’t pleased. (And I’m guessing he’s delighted to be going off the inpatient rotation as of this evening.)

I plan on talking with the new doctor-in-charge in the morning. I would prefer, naturally, to have the discharge papers all in order. I’d also prefer not to have social services knocking on my door because I firmly believe Alyson would be better off at home.

I can’t sleep and am worried about all the various implications of all my decisions.

Once again, cancer sucks.