Struggling for gains 3 months after surgery

It’s not as gloomy as the headline reads, especially if you focus on my son’s improved mobility and reduced pain since his major spine surgery. What has us all very concerned is his loss of endurance and loss of weight, which is why the image you see to the left shows my just-completed grocery store run for some stuff I never would have considered buying before. But this week’s post-op checkup has us taking drastic actions and the home has never stocked so much junk food!

To bring you up to speed, my 17-year-old son was diagnosed with “Scheurmann’s kyphosis” last summer. (Read: “My son needs surgery not ‘sit-up-straight’ reminders”.) It’s a problem with how the vertebrae has grown. It causes posture problems along with other physical issues. In the weeks before his surgery, he struggled with severe back pain targeted to the base of his overtly-curved spine. It was so bad he couldn’t go to school.

Post-op recovery comes slow
The surgery in December went well. He now has titanium rods and dozens of screws keeping him straight. Gone was the spinal pain. Now post-op, my son had to deal with a different kinds of pain. Incision pain and musculature pain, where the surgeon had to move things around to work on the spine.

It took a few month, weeks longer than we hoped (Read: “The recovery paradox: Movement causes pain; Moving reduces pain” and “Celebrating his birthday in pain.”), but finally the pain disappeared. Except for the occasional jolt after rolling over the many pot holes on the streets of New York and the sudden out-of-the-blue spark from surgery-deadened nerves coming back to life, he is pretty much pain free and off medication.

Signs of hope and concern
He recovered enough that we let him fly with his brother to Phoenix, Arizona to spend mid-winter break with his grandparents. I can’t tell you what it meant when I got a text message from my son that read, “Today I had a good day. We went to the zoo. I ate a giant plate of nachos meant for 4 people, by myself. And I ran for the first time since the surgery. Isn’t that great? I can run!”

I wept out of both pride and concern after reading it. Proud over my son’s milestone of running again. Concerned that we are still so focused on how much he is eating. Without going into details, the doctor told us this week that he needs to put on ten pounds. Just ten pounds. No problem, right? He’s been eating normally for months. (“Normal” for him incudes eating the majority of a 12 inch, 11.5 lbs. cheese cake he got for his birthday and usually second or third helpings of most dinners.) If anything he has lost weight since returning from the hospital. The rods and metal pieces now part of his spine are ever more prominent on his back. A troubling sight and uncomfortable for him. My son says he can really feel the metal now with the reduce padding of fat in the skin and has trouble laying on his back.

Coupled with the weight issue there’s the matter of his endurance. He has none. Sure he can finally make it through a school day (which is huge!), but when he gets home it’s straight to bed for a nap. And if we don’t wake him up he’d sleep straight through dinner.

One important thing to mention is that the day after the surgery, my son’s hemoglobin and hematocrit levels were low. Low enough to force a blood transfusion. That helped but didn’t bring him up to normal. We’ve checked him a few times since, including this week, and the new blood tests show he’s still a little low. Doctors say this is expected for someone right after surgery, but it should be better by now. This and his weight are why he has low energy.

Action plan: Eat. Eat. Eat.
So the action plan for now is to have him eat as often as he can. The surgeon even wrote a prescription for the school to force the teachers who don’t allow eating in class to allow my son to eat. That leads us back to today’s major run to the grocery store to buy stuff I never would have dreamed to buy. But the surgeon said he needs to eat. Eat stuff high in fat and protein. Heck, he even recommended we frequent McDonald’s and suggested he regularly partake in shakes and burgers.

We’re also changing up what he’s doing at Physical Therapy and next we’ll consult with my son’s pediatrician about if we need to start iron supplements in addition to the multivitamin he’s already taking.

Don’t get me wrong. To see my son stand straight and tall is such a wonderful gift. We are so pleased by how it has improved his life. We’re just struggling to get back to normal. I’m optimistic we are in the final mile of this marathon. Just hand me the water sideline-supporter, so I can splash my face and keep moving forward. Step by step.

Note: My son is recovering from major surgery to correct his curved spine. He was diagnosed with “Scheurmann’s kyphosis” last summer. 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. I write about it in case it helps other families. If you need to know more details please reach out to me.

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