Forgive the mangling of the popular power-up phrase from the Wonder Twins, a pair of cartoon characters from the “Super Friends,” but it seemed apt. As did the “Family Guy” image to the left. I think they help me illustrate the big paradigm shift from worrying parent at the hospital to active caregiver here at home. You don’t have to be a super hero to do it, but man it sure feels like it sometimes.
Homecare by the numbers
“I’m a 9,” my sixteen-year-old son told me after we made the bumpy drive home from the Manhattan hospital where he spent the last 102 hours. He is recovering from major surgery to correct his curved spine. He was diagnosed with “Scheurmann’s kyphosis” last summer. (Read: “My son needs surgery not ‘sit-up-straight’ reminders” and “Spine surgery is a marathon not a sprint.”) Being a “9” is bad. It’s a reference to the pain scale. Medical practitioners use the scale “1 to 10” to determine the severity of pain a patient is experiencing.
Think about it. How DO you know what type or level of pain another human being is feeling? You can’t judge from outward expression (though if you’re caring for a loved one there are distinct signs you learn to spot, like a crinkled-up forehead or clinched fist), nor can you tell from medical-monitoring equipment. The typical, “How are you feeling?” question would only provide you with unhelpful descriptions, like “OK” or “Bad.” So when you’re hospitalized and dealing with pain you become a number. Or rather your pain becomes a number. “One” being great, very little or no pain. And “ten” being the absolute worst pain you have ever experienced in your life.
Once you have an idea of how bad the pain is, the goal then is to treat it. If you can. As a home caregiver, you are only armed with the treatments given to you by the doctor. In our case, it’s a short list of pain killers with specific timing of doses. So if the pain has spiked you pray that you’re in the window of being able to give another dose of medication. If you aren’t your hands are pretty much tied. Comforting words and distractions may be the only things you can try.
In the first 24 hours of homecare it’s been pretty rough on my son. A night of eights and nines transitioned to a morning of sevens and eights. You try to time activity with the pain meds. For instance, before trying our first sponge bath (no showers or immersion baths until the wound bandage is checked next week), I made sure he had his best pharmacologic friend in his system. Even then the activity spiked his pain from a 7 to a 10. And we only got through half of the cleaning. Sigh.
The recovery paradox: Movement causes pain; Moving reduces pain
Before we left the hospital, the doctor asked my son what would be the “number” he could live with, short-term, while he was home healing. My son said “4.” I really hope we can get there. After the first day here at home, four seems impossible. I say that because in addition to pain management, we’re also supposed to keep him moving, which hurts him. This type of surgery amazingly does not have any restrictions on movement. In fact, physical therapists say the more we can get him to move the more the pain will drop. Bed rest in this case may feel the best from his perspective, but it will only delay the healing. It’s tough to accept as a parent, especially when you see what moving does to his pain level. It’s even tougher to sell the concept to the teenager who’s in pain. We need to make sure he sits in a chair at least an hour a day and pushes himself each day on standing and walking.
What’s ahead? We start physical therapy next week. I know it will be tough on him, but at least it won’t be “Mommy Medic” or “Daddy Doctor” forcing him to move/cause pain. Christmas Eve, while most folks will be scrambling to buy last minute gifts, we’ll be going back to the hospital for an evaluation and bandage check. I hope by then we’ll be hearing numbers under five.
Note: As I wrote in the first post about my son’s condition, I won’t promise I will share every part of the coming journey, but if there is something that may help others I will. I’m being overly vague on names and places out of respect for my son’s privacy who isn’t thrilled when he’s the focus of attention. If you need to know more details please reach out to me.