Dilaudid Daze

Note: This timeline may or may not be accurate. I don't really know. I know the events below happened, and most likely in the order below. I am less confident in the specific days. The problem is that, until Christmas Eve, I have found it very difficult to write while getting enough pain medication to be able to swallow.

(D+9, Thursday?)

The morphine did its job for my back spasm. However, the next day, my throat was increasingly red and sore, and I was increasingly reluctant to swallow. Different nurses had different approaches to this problem, as the problem gets worse:

• I just have to do this. (For a few rounds of medication, I am able to force myself to swallow tablets and capsules. Then I start gagging upon swallowing anything without a smooth texture.)
• We can crush tablets and mix with applesauce, which I might be more capable of swallowing. (For a few more rounds, I am able to do this. Then I start gagging on the presence of any grains of anything.)
• We can open the capsules and mix the contents with applesauce. (But eventually, I can't swallow even water or applesauce.)

At some point, we switch from morphine to dilaudid. One nurse says dilaudid is more effective, while the doctor says the two are essentially the same, but you use smaller doses of dilaudid to achieve the same effect. The main side effect of either one is confusion and sleepiness.

I often find myself waiting longer than expected to get my dose. First, there is a wait for the task of resolving my pain to rise to the top of the nurse's pile. Then, if we are changing the dose, there is a wait for getting through to the doctor on call and waiting for the dose inquiry to rise to the top of the doctor's pile.

Or at least, I think that's what's going on. I am not always competent to judge my nurses. One time, I asked for a dose of dilaudid around 6 in the evening. Around 8, I was talking to Jan and complaining that I had not received a dose for hours. My night nurse, who had just checked my records, overheard me and corrected me — I had been given a dose at 6:18 and either forgot or slept through it.

There were definitely other times that I was not fully in charge of my faculties, such as when I would fall asleep while eating or it would take me an hour to write a paragraph that, upon later reflection, was pretty incoherent and often full of repetition. In these cases, I was probably getting more than I should, even though it was not sufficiently managing the pain.

In a discussion with the nurse practitioner on my case, we decide it's time to switch to a pump.

A few hours later, I request my next dose of dilaudid, because my throat pain is no longer tolerable. My nurse tells me I can no longer request dilaudid, because my order has been switched to the pump. 

Patient: Can we set up the pump, then?

Nurse: No.  We don't have one on the floor. But we have put in a call to transport. 

Patient: (Uh oh...)

About every half hour, a different nurse pokes her head into my room to tell me that the pump is coming. I become increasingly skeptical and agitated. I make the point that it isn't a good policy to cancel one medical treatment in favor of its replacement until that replacement is actually in hand.

A couple of hours into waiting for the pump, a nurse observes that I can get a one-time dose of dilaudid. That would have been good to know a couple of hours ago, but I am relieved to finally get some pain medication.

I get a visit from a transportation manager, apologizing for the mix-up. Then I get a visit from the nursing manager. From the two visits, I gather the following:

• Our floor did not have a pain pump. Each floor is supposed to have one.
• The initial request for a pain pump got lost.
• My nurse was fairly new to the floor, which may explain why she didn't think of the one-time dose.

The pump supplies a continuous flow of 1 mg of dilaudid per hour, and I have a button I can press every 10 minutes to get an additional 0.3 mg. The idea is that if I ever pump myself into unconsciousness, I won't be alert enough to keep pressing the button.

On Saturday, I wake up with a tolerable sore throat. The pain pump is set to ensure that I receive at least 1 mg per hour, and I had added a few extra shots when I woke up during the night to pee. This tells me that even a fairly low dose does a fair job of managing the pain, which means the unmanaged pain wouldn't be so bad. Good news!

We lower the background dose on Sunday, which is Christmas, and I don't press the button all day. I can swallow without pain, so I'm back to my only eating-related problem being the fact that all food tastes terrible.