Mark’s New Groove

It has been a rough week.

It’s all of it. It’s the reopening of the repeated trauma of seeing Mark’s head stitched together again. It’s the new trauma of seeing Mark’s new head, swollen and settling into some new norm. It’s learning a new set of medical terms. It’s during Covid, meaning Mark and I are doing this alone. It’s during political unrest, meaning I have to carefully navigate outside information to keep my stress levels in check. It’s during the winter, meaning I can’t take breaks from the hospital to sit in the nearby urban park and just let the sun soak into my skin.

While Mark was sleeping this morning, I took my first long look at his forehead. I watched it. I filmed it. I tried to make sense of it.

The day before, I had gotten my first glimpse. I had to leave the room, get air, take a moment to cry it out. It’s not a sagging tent. The doctor removed more bone than expected. He removed the dead bone flap, which was expected. But the surgeon also could visualize infection in surrounding “good” bone. So they removed that, too. And then rounded the edges. It looks more like, if Mark’s head was made of clay, that someone threw a lemon at it.

I don’t understand it yet, but sometimes that area just lies there still. Sometimes, it comes to life. When I took the video, Mark was sleeping and with each breath, his lemon-spot would rise and fall. Sometimes it would kick out a pulse-like action. Other times, all it is is a quiet little indentation.

During Covid, the only community we have while inpatient is each other, and the nurses and aids. The nurses and aids on Mark’s floor seem to average out at 25 years old. They are wonderful. They do all the things they need to, and then some. They all but tuck Mark and I into bed as we lie next to each other, demonstrating a kind of nurturing that I find remarkable for their age. There are more male aids than we’ve had in the past, and they are all in nursing school. One soft-spoken young man told me he’s aiming to become a midwife after becoming an RN. Then he said, “Do yinz need anything else?” A future proud Pittsburgh midwife, for sure.

Why is Mark still inpatient? Those gosh darn bacteria. The neurosurgery and ENT surgery teams are waiting on the infectious disease doctors to finish identifying all the “bugs” in Mark’s head before discharging him. The surgery was on Monday. How long can it take to grow these cultures? The path lab has identified two out of the three bacterial species that have popped up in the tissue samples. Which drugs will need to be given, and the frequency and rate at which they will have to be given, is the big question as we wait on binary fission. For now, the docs are taking the scorched earth approach and are giving him lots of antibiotics. That’s not great on his system, so they will narrow it down to the right drugs for the right bugs when they decide what to prescribe.

Mark’s got his PICC line in, and they’ve started training me in how to administer what will be six weeks of IV antibiotics at home. It’s a lot. Sterile procedures, refrigerated drugs, some may need to be mixed, saline and heparin flushes…even the exact equipment I’ll have to use will depend on which antibiotics they settle on using.

Mark, after a few days of “So what time am I going home today?” has settled down. Almost eerily. Yesterday, he used the call button to reach the nurse. “I need to go to the bathroom,” he said. And then he waited for them to come in and help him. If you’ve read about any of Mark’s past hospitalizations, this is a far cry from the ornery guy who pulled out lumbar drains and had to have a room sitter assigned to him.

How is Mark? He’s pretty good. He says no to all pain medication, and he reports that he’s a “2” on the pain scale. He’s periodically confused. “Did the doctor say I get to go home after dessert?” No, honey, he didn’t. He’s nauseous on and off, which maybe is because they are wiping out his whole microfauna while we wait on the path lab. Or, it could be because he was nauseous on and off even before this new development. Who knows. Sometimes he will let them give him a Zofran shot. Sometimes not.

My head is a little swimmy and scattered while I try to integrate this new reality into my understanding of Mark and my life. It’s a strange reality. The nurse joked with me that Mark looks like Jimmy Neutron, because his hair is sticking straight up behind his incision. I spent time trying to figure out what animal his head was reminding me of. I looked at head shots of praying mantises for a while. Then it struck me that the right vibe is more the Geico Gecko. Then I swung to thinking about how his head is reminding me of a pregnant woman’s belly. You can watch it for a long time and see nothing. And then sometimes, you see a sudden kick of the living thing inside. And then I swung to thinking about all the edges of things in my house. What if Mark blacks out and falls against a corner of a piece of furniture? Can I round every edge in the house?

And then there’s the boys. I drive home from the hospital every day, and I am drained. Twice, I’ve stopped at the only restaurant nearby that has a breezy open patio. I have dinner alone just to give myself time to decompress before entering the house. Our community has started a meal train, and thankfully I can come home to the boys plating hearty, warm food. They are usually yucking it up about something. Michael is giving Matthew ridiculous math problems to solve. Ben and Matthew are teasing each other about something. I try to engage, while looking for space to give a simple update. I don’t really know how to prepare them. I am doing my best.

Maybe today Mark will come home. Maybe the home health nurse will come to make sure I know what I am doing, the infusion supplies will be shipped and fill up our refrigerator. Maybe tonight Mark will sit on the couch, Robert snuggled up next to him, while we watch Jeopardy and Wheel of Fortune. Maybe tonight, after making sure Mark is safe in bed, I will sit with the boys in the living room and we will process all this.

Maybe, maybe, maybe. We will see.

3 thoughts on “Mark’s New Groove

  1. I love this picture of your smiling handsome husband.I weep for you dear Diane with all that you and precious Mark are going through.Continuing in my prayers for him and you and know that I love you both dearly.Sending gentle hugs to him and you🙏🙏❤❤xoxo

  2. Oh, Diane… this one is a lot. A LOT. Waiting alone… watching The Spot alone… and rounding corners in the house to protect Mark’s vulnerable brain. It is a lot. We continue praying for you all – you are not alone, but it must seem that way.

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