Caregiver Log: Such, Such Agony

It’s been almost a week since Jenny went under the knife, three times, to try to repair damage to her intestines. This is just the next chapter in a long history of medical problems and procedures. For more information, see my last blog post.

On Monday, they performed the initial exploratory surgery to see what was going on inside. The surgeons worked for nine hours- patching holes, releasing adhesions, and cutting away a twist in her small intestines. When I found her Monday night, she was on a respirator and sedated, resting peacefully.

On Tuesday, they installed the mesh to support her abdomen in a four-hour surgery but didn’t close the incision due to all the swelling and massive inflammation of her bowels. They had to wait for conditions to improve. They had to wait to see if they had found everything. When I visited Tuesday night, she was still asleep on the respirator, but looking less well, more ‘beaten up’ as you would expect.

On Wednesday, we waited. She was still sedated and on the respirator, but opened her eyes for a moment when I called her name. I monitor her vitals on these visits. Things were happening- liquids were becoming clear (good) but her heart rate and blood pressure were going down (bad), and her color was very pale (bad). Keeping her abdomen open was a risk they had to take but the rest of her body was reacting.

On Thursday, I spoke with the surgical team for the first time. All along, the nurses have read me the notes in her chart, told me what the plans were for Jenny, what was happening at the time of my visit. Apparently, though my name is in her chart, they didn’t have a copy of the power of attorney papers. They didn’t contact her brother either. The day nurse on Tuesday told the night nurse that Jenny had no family (what?). So, communication is a trouble spot at the hospital. But so what? As long as the care is excellent.

The fact that they didn’t call was a good sign. It meant she was still alive. They would contact someone if she wasn’t…

Finally, on Thursday night, Jenny was awake! And she wanted to talk but the respirator prevented it, so I got pen and paper for her to write instead. Her first message to me was, “Such Such Agony”.

It was a reality check on the joy I felt that she was awake and alive. She was suffering and unable to communicate. I was able to relay messages to her nurse. I explained to Jenny what I knew about what had happened in her surgeries. I combed her hair and tied it up out of her way. And she wanted me to post a picture on social media to let everyone know she was still fighting.

As visiting hours ended and I packed up to leave, her surgical team arrived. And they were worried. The first thing they said to me was, “She’s not out of the woods yet.” It turns out that where they removed her twisted small intestine and connected the healthy parts together was not healing as it should. They remarked on the extensive inflammation in her guts as well as the highly unusual amounts of scarring present- “It’s like pouring concrete on tissue paper.” They were still not sure what they were going to do. But whatever it was, it would happen at 7:30 Friday morning.

I went home soul sick.

I had believed that they only needed to stich her up and were just waiting for her swelling to go down. But this was yet another life-threatening surgery.

On Friday, every hour without a call was more hope she was still alive. I knew it would be a long one and after seven hours, they called with the good news that they found another hole, which they fixed, got the small intestines secured, and closed her up for the last time.

Friday night, she was off the respirator and talking- “No one should ever have to go through this surgery twice.” It’s excruciating and very dangerous. And while it is not likely to be her last surgery (given that her body is a train wreck), it will be the last on her bowels. They referred to it as a ‘Hostile Abdomen’.

The surgeons have made the decision that any further surgeries will have diminishing returns and only cause more damage than they would heal (she was also given this determination on her lower back after her last surgery in 1989). They will manage her problems medically from now on. The great hope is that they found and fixed everything.

Part of the reason she has these medical problems is because her body produces excess cells at an accelerated rate. Cuts heal lightning fast. But in the past, she also developed bone tumors, soft tissue cysts, and aggressive cancer cells. She grew her tonsils back- seriously, WTF! She’s got some of that ‘Wolverine’ power.

But unlike the movies, real life is so much more disgusting and difficult to watch. Recovery is So. Damn. Slow. No matter how courageous Jenny is, she is also desperate to have it all over with. For now, she must lay in bed on IV nutrition, unable to eat to satisfy hunger, unable to move herself to relieve pressure and pain, unable to get up and walk out of the hospital for a moment of fresh air.

There is a risk in her good fortune of surviving these crises- that people will begin to underestimate the risk and overestimate her ability to overcome them. Let me be clear: Jenny was extremely close to not making it this time. And unlike ‘Wolverine’, it will take months to recover. Her quality of life may be permanently affected. The hope is that the improvement to pain and repairs to the bowel will outweigh any new side effects.

Jenny is probably on her 8th or 9th life now. I’ve asked her to figure out what’s on her bucket list so that she may try to do some of those things she’s put off for ‘someday’, before her next medical crisis. We’ll see what wild ideas she comes up with…

For now, please cheer for the good news that Jenny is still in the world. It’s the best news we’ve had all week.

If you are willing and able, please consider donating to Jenny’s recovery fundraiser on GoFundMe.

-Copyright C.M. Mounts, March 2021

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