Laurie is consistently reading the blog and responding to brief emails. She's still pretty tired though, so don't expect too much if you send her a note (that ties into the subject of the post later on).
Our first night home was a rough one. I was really close to taking her back to the hospital around 1am. There are some simple instructions they should have given us that they failed to do:
- Do not under any circumstances lay on your right side. You can cautiously tilt to the left and sit in a chair to make your back more comfortable. However, rolling onto your right side will be EXTREMELY painful.
- It's OK to take two Vicodin at bedtime instead of 1. The real guideline is to take the Vocodin for pain, but due to the acetaminophen content and it's effect on the liver do not take more than 6 pills a day.
When we got up and going Monday morning I called the clinic right away about Laurie's pain and my concern. I got to a triage nurse at 8:30. By 10:30 I called back and was told they were still trying to reach the team. At 12:30 the Surgeon's assistant called and said she wasn't working that day, but got the message and called us anyway. At 4:00 we got a call from both the triage nurse and the lead Resident Surgeon on the case. They were trying to reach me to talk about Laurie (they didn't know the Assistant had called). WTF?? Fortunately, Laurie got better as the day went on or I would have been totally balistic and sitting in the Stanford ER asking for them (with Laurie of course).
[brief break here while I get out my soap box on another topic]
How many of you have been asked by a nurse or doctor "on a scale of 1 to 10 what's your pain level?" What the heck does this really mean? How many of you were actually told how to use the scale? They say "10 is the worst possible pain you can imagine". How do I know what that is? I did some research last night and got a bit of useful information. Here's a good link: http://painconsortium.nih.gov/pain_scales/index.html.
I think the best guide I found was in a nurses blog. A male patient replied that his pain level was a 10. The nurse stepped back and said, "OK, let me be clear on this. If I took two bricks and slammed them together on you testicles, that would be a 10. Now, what's your pain level?" The patient meekly replied "3".
Unfortunately, there is almost NEVER a clear explanation given to the patient. Not once did I hear an explanation provided when we were at Stanford, but I heard the question almost every 2 hours and Laurie often replied 5 or 6. Having now educated myself I realized that Laurie was consistently low by about 3. If I'd known I would have spoken up at the time. Laurie was pretty out of it, but I know her well enough to have said she was really much higher. Lesson here: if you're in significant pain and someone asks this "wonderful question", always error on the high side.
I found myself really ticked (understatement here) at the Surgeon who kept countermanding the residents and others who saw Laurie. They saw her and understood that her pain levels were much higher than she was verbally saying. It was crystal clear when he saw her Thursday night. He seemed to actually give her less pain medication when countermanding instructions prior to seeing her. He didn't want her to be groggy. Well, if you're in extreme pain and unable to sleep wouldn't you be groggy?? Lack of sleep does that to us, right!! Needless to say, I'm going to have to be very careful what I say to the surgeon when we see him in a week. He was way under medicating Laurie and it was just cruel to see the pain she was in because he has a conservative approach to pain management.
[carefully descending from soap box]
I talked with an oncology nurse who has been in touch with Laurie over the past 6 months. It's part of this wonderful Cisco benefit program where someone checks in with Laurie to see how she's doing and ensures that she has what she needs and gets all the information on what's going on. She was livid on the phone. She said doctors in this situation are notorious for under medicating pain. She spent a while on the phone with me explaining the pain scale and helping me to understand things.
The good news is that I now understand the pain scale and I have a better understanding of how to ensure we keep Laurie around a 3 level so she can rest and recover. Now I just need to get them to give us a muscle relaxant so that her muscles will quit twitching when she's trying to sleep. That's today's mission.
Laurie is getting better each day, I just wish I knew from the beginning what I know now so that I could have helped to avoid some of her pain and discomfort.
