Thursday, August 10, 2017

Notes from a Spine Surgery

Ren had his sixth spine surgery a couple of weeks ago. The only way to explain what major spine surgery does to the family is with this image that keeps going through my mind. Forgive me if it seems overly dramatic:

It's as if a massive bomb has been detonated in the middle of our living room. I see it coming but can't stop it and immediately throw myself on it in an attempt to mute the impact. The initial blast leaves me battered, and, not surprisingly, I can't contain the damage. So, now I'm hobbled and trying to gather up the pieces of our lives. I won't be able to find all of them--some have been pulverized beyond recognition and others blasted so far away they can't be located. But with the pieces we have left, we begin the slow, tedious process of putting our lives back together, knowing that while we might be able to approximate life before the blast, it will never really be the same.

This surgery, I have kept a running account on my Facebook feed. Here are some excerpts. I'm not sure they are any less dramatic than my image of the bomb.

7.24.17 (surgery day)

Procedure started at 7:38 am and finished at 2:32 pm (as usual an hour later than predicted). Now we wait the 2-3 hours he will need to wake up and get transferred to his room.

(Editor's Note: he was actually in recovery for FOUR hours).

Patient number 349472

7.25.17 (day 2 in hospital, first day post-op)

This is going to take awhile.

Surgery survival bracelet.

7.26.17 (day 3 in hospital)

Saw surgeon this morning. Said he put in more than 200 sutures and over 100 staples. Oh, the irony. Long ago, I realized I could never be a doctor because blood and incisions make me queasy. Hahahahahaha. Sigh.

(Editor's Note: It was actually 200+ staples on a 58 cm incision)

Ren with Mimi, our new stuffed cat


Heading home to see kids for the first time in three days. 60 hours in the hospital is surprisingly exhausting!

(Editor's Note: I only managed to be home a total of 30 minutes between the immediate care visit for Pink's infected mosquito bite and a phone call from a disoriented Ren begging me to come back to the hospital. In the end, I was away from home for 160 of 180 hours during the two weeks he was in the hospital/rehab.)

7.28.17 (last day in hospital/first day in rehab facility)

So, here's the lowdown. The lumbar and thoracic spine repair seems to have gone well. Pain is controlled and he is able to walk w a walker. Unfortunately, the length/intensity of the surgery has triggered unexpected neck issues that cause excruciating pain and lead him to lose usage of his left arm and hand whenever he is upright. This is problematic because he needs to be upright to avoid complications (like pneumonia, which would be catastrophic) and to work toward mobility. Without that hand, he is unable to use a walker or care for himself enough to go home. The neck symptoms probably also mean that intervention has to happen sooner than later.

So, as of now, we know that he will be transferred to a rehabilitation hospital and stay there for 7-14 days. Not sure what happens after that.

Being transported by ambulance for the first time.


My week as summarized in the manner of Sei Shonagon's "Hateful Things."

Things I Hate:

  • Surgery that goes well beyond its projected end time
  • Four hours in the recovery room accompanied by phrases like "chest pain" and "extremely blood low pressure"
  • Hospital cafeteria taco bars
  • Handheld urinals
  • New nerve pain that is unexplained and makes the color drain from the surgeon's face upon evaluation
  • Extra long incisions held together by 200 staples
  • Answering the exact same questions and providing the same narrative over and over again
  • Hospitals that don't restock their vending machines
  • Loved ones strapped to gurneys and whisked away in an ambulance
  • Ambulance rides even when it's not an emergency
  • Rehabilitation facilities that look like they're straight out of the 1980s
  • When children cry themselves to sleep
Things I Love:
  • Friends who remind me to breathe
  • People who go out of their way to make sure my family and I are fed
  • Learning new games in hospital waiting rooms
  • Distracting texts and conversations
  • Parents who come to help even when you tell them not to and a babysitter who goes with the flow
  • Cold Japanese beer, especially when it's on tap
  • A new playlist to get me through a crazy summer
  • Handmade cards from the kids

7.29.17 (day 2 in rehab facility)

I have been through 10 (TEN!!) major surgeries with Ren and have never seen it go this way. Appreciate prayers/positive thoughts for things to turn around pretty quickly.

7.30.17 (last day in rehab facility/first day back in hospital)

On Monday, July 24th, Ren had his sixth spine surgery. It was a thoracic-lumbar fusion to repair a failed fusion at L1 and to deal with significant structural deterioration in the thoracic. The surgery took 6 hours with an additional hour before and one after in the operating room. He spent also four hours in recovery due to problems with blood pressure and chest pain.

The first 24 hours post op offered no surprises other than extremely low blood pressure that made it hard to stand due to dizziness. By day 3, things seemed to be going well, but mid morning, he began to experience scapular pain that eclipsed any other pain he'd been feeling. By the evening, he couldn't sit up without severe and completely new shoulder and arm pain. The next day, these symptoms worsened and eventually, he stopped being able to use his left hand when upright.

On the morning of the fourth day after surgery, the surgeon had a chance to evaluate Ren when he was sitting up and agreed that these severe pain symptoms were coming from the cervical spine despite the fact that part of the spine wasn't involved with the surgery.

Because Ren has an incision (from his tailbone to the base of his neck) that has approximately 200 staples in it, he cannot undergo an MRI to look at the neck until they've been removed. Without an MRI, it is impossible to tell whether the neck issue will resolve itself or require surgical intervention. Given the severity of the pain and the way his arm mobility is being impinged, the surgeon suspects something more than usual post-surgery swelling is happening.

Ren has had five other spine surgeries and has dealt with chronic severe pain for most of the last six years. Even when doctors have expected him to be laid low by pain due to the severity of issues in his back, he has always demonstrated sheer determination in not letting the pain keep him from living. He and I both know a lot about pain and spine surgery, and the current situation is unlike any other as he's trying to recover from major surgery while also being debilitated by new and excruciating pain. Needless to say, it's pretty overwhelming!

Things removed from Ren's spine this surgery.
7.31.17 (day 2 back in hospital)

The man was looking a lot better this evening than he has in awhile. Still working on pain management and some unexplained chest/abdomen pains. The neck is also an issue that requires long-term strategizing. For now, he's still hospitalized near the rehab facility. Will be here at least in more night. Looking at heart and gall bladder and will consult with spine surgeon today. Think rehab facility greatly exacerbated situation so will be insisting he doesn't go back there.

8.9.17 (day 5 at home)

"Wow! You win. I've been a nurse for 32 years and have never seen an incision that long!" #actualquotefromhomehealthnurse #goodatwinningallthewrongprizes

8.10.17 (day 6 at home)

Spine surgery recovery is slow and tedious. On the surface, Ren’s restrictions seem simple: no bending, no twisting, no lifting. But, almost everything we do during our day requires us to do one of those three things. Ren can do very little for himself. Fifteen minutes up, with a short walk and a short sit, is enough to exhaust him for a couple of hours. Pain continues to be his most constant companion, keeping him up at night, causing him to sleep a lot during the day, and making most food seem totally unpalatable. After a serious flare with a nerve in the lumbar that sent excruciating and debilitating pulses down his calf for 18 hours straight earlier in the week, his most persistent pain continues to come from the shoulder as a result of whatever is going on in the neck.

As happens with every one of these surgeries, we both get frustrated—me because he makes the most specific (and seemingly inane) requests even as I feel like my hands are completely full with all parenting and household duties and him because he is in constant pain and completely dependent on the kindness of a sometimes (often?) grumpy spouse and less-than-reliable children. This surgery is different because it was so major but also because we got so little time post op before learning something else could be wrong. For now, we are in a holding pattern until the staples come out next week and we can get a good look at the neck. Here’s hoping for some grace and some joy and a whole lot of humor as we two stubborn souls fight to keep our patience!

First time outside in weeks.