Day 49

Oh golly, what a week it's been. As much as I love having my boy home and recovering, I am totally wiped out.

Since we weren't expecting him to be discharged to us so soon, we were kind of caught with our pants down.

When they discharged the kid Monday night, the treating doctor from the care hospital went over his medications with me. Everything was the same until we got to the depakote. They had been giving him twice his prescribed dose.

"What should we do?" I asked the doc.

"Go ahead and give him his regular dose."

Uh no. We've been dealing with psychotropic meds for a number of years, and know that drastically cutting a med can cause a bad case of screaming meemies at best, and possibly a seizure at worst. So first thing on Tuesday morning, I called Big Kid's neuropsych and explained the situation to the receptionist. I left an urgent message asking the doc to call to give us some guidance on what to do. No return call on Tuesday. I called again first thing on Wednesday, and left another message.

The receptionist was completely unconcerned and said that the doctor hadn't received the message the day before. They had closed the clinic due to snow.

Well, SOMEBODY was there to take the initial message, I argued. Couldn't they have let the doctor know that one of his patients had an urgent situation? Did the phones automatically stop working every time it snowed? She was unimpressed.

By 4 o'clock there was still no return call and I was getting frantic. I called Hubby and asked him to give it a try. He called me back and said I'd probably hear from the doctor within an hour. I did, and the doc was none too pleased. Hubby had chewed his receptionist out after getting the same blase treatment I had received and told her the next call would be from our lawyer. Oy.

I got a long non-explanation about how since he wasn't the doctor who doubled the dose and had no idea why they doubled the dose that he couldn't help us. I finally got frustrated with him and said, "Look, you're the original prescribing physician. Who the heck else are we supposed to call? All I want to know is, is it ok to go from 2000 mg of depakote directly down to 1000mg? Can you give me a little advice here?"

No, no, not good to do that. Why don't we keep him on the 2000mg dose until he can see Big Kid after the first of the year?

Fat chance. The kid is half zombie with overmedication. He's glassy-eyed and has the shakes. I called our family doc, who is now in charge of the boy's continued recovery. We worked out a tapering down plan. whew.

I think we may be looking for a new neuropsych soon. The lack of concern over the kid's situation bothers me. It's not like I called him after hours. You'd think within 2 days he'd get 5 minutes to return an urgent call. Then again, he might not want us back either, after Hubby went all medieval on the receptionist.

Big Kid has a large blood clot in near his armpit. So he has to take cumadon (sp) for a few months. The nurse has to come and check his levels every day or so. He gets physical and occupational therapy a few times a week. He's refusing to use the walker or a cane, so we have to walk with him to make sure he doesn't fall flat on his face.

One problem we didn't forsee was the fact that we don't have a walk-in shower. The kid can't lift his legs over the tub without one of us holding him steady and another lifting his legs. LOL Bathing has become a family affair.

We're in the process of purchasing a pulse-ox monitor. Luckily the insurance company is going to pick up a hefty chunk of it. The job of weaning him off the oxygen is going to be ours in tandem with the home-care team.

He's doing really good, considering that his projected stay at the acute care center was going to be 4-5 weeks. He was out of there in 2 1/2.

Big Kid is really glad to be home. Except for one thing. He misses the nurse call clicker thingy. LOL Yeah, for the first few mornings I got up at 3am to make him french toast and cocoa.

Yesterday I bought a bunch of microwavable breakfast foods and easy packets of Swiss Miss for him to fix by himself.

One day soon, hopefully we'll all be able to get on a reasonable sleep schedule.

Until then, click this, Baby. ;-)