The Caregiver’s Perspective: A Continuation

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Last Updated on February 19, 2024 by The Smetz Files

This is a continuation from a previous post. To get caught up read PART I.

I drove across town, arrived at the main hospital, and swiftly made my way through security to Jay’s room. He was still in a lot of pain and discomfort, the anxiety was setting in, and we waited, somewhat impatiently, for him to be taken for more extensive imaging. 

It was late evening when they took Jay for imaging, promising he’d be back within an hour. His parents decided to drive through the night to get home to be with us and my parents had packed up our kids and taken them to their house for the night. I’d FaceTimed with them earlier to remind them of specific things to pack and S dutifully took care of Bronx’s needs, while I calmly tried to reassure them everything was fine and they’d only be away for the night. 

Preparing for a long night

To say we are endlessly grateful for family and friends who instantly jumped in to cover all our needs would be a ridiculous understatement. 

After verifying all our bases were covered for the time being I quietly wept and bemoaned the fact that we were here…again. Perhaps most agonizing was the inability to lessen his pain and how this could be inexplicably happening to an otherwise healthy guy. 

At some point the medical team found some combination of drugs that reduced his pain. This was a huge relief, but the ‘old’ Jay returned.  Ever focused and determined, he was anxious to check off the boxes to be discharged. He’s a tall guy and hospital beds are wholly uncomfortable for him (are they really comfortable for anyone?!), and he was ready to get home and continue his recovery in the confines of his own bed. Of course, all of that took time and patience, but once he was cleared from the vascular team that he was not in immediate danger from his aneurysm and we had an appointment to meet with the vascular team to determine his protocol, Jay was discharged.

Quasi relief

While his pain was somewhat manageable at home, we began the process of waiting for the follow up appointments and again questioning, how could this be possible. He slept most of the next few days, only waking to occasionally eat, take meds, and attempt to get comfortable (his head and neck pain continued). 

This went on for the next several weeks. While there was some improvement with his headaches and neck pain, we spent the Thanksgiving holiday with Jay mostly in a quiet, dark room, icing his neck, and hoping his headaches would go away. Some days he gingerly ventured out. He worked some days in the office. He went to G’s final fall ball game. He attended S’s state gymnastics meet. He lived cautiously, never wanting to overdo it in the hopes of staving off the next debilitating headache. 

Throughout November and December he had a series of procedures to cure his brain aneurysm. There were hospital stays, long days of recovery, and lots of discussions of how to alleviate his symptoms. He spent his birthday in surgery. He spent the days before Christmas in surgery and neuro-ICU. When the nurses asked what our kids were asking for from Santa, Jay responded with a sobering, ‘they just want Dad to be okay.’ It was not the holiday of our dreams, in fact, we’d rather forget it completely. He was home for Christmas Eve and Christmas Day, but he was still in recovery from his most recent procedure and slept most of the holiday. 

The kids were magnanimous in their response. I know they were disappointed. I know they wanted to play and celebrate and be with Dad. S and I made a big Christmas dinner. She helped me make pan seared filets, we roasted veggies, and made yummy appetizers. They gingerly cuddled Dad as he ate dinner with us at the table that night. 

Turning the page

Gradually, by mid January Jay’s headaches were all but gone. It was a welcome relief, one that had not been guaranteed. The flow diverter device they implanted appeared to be working. Though, we still needed to get through his six-month scan to determine if that was true. Life returned to a semblance of normal. 

Jay still had some restricted activities and we were cautious and dutiful to maintain those. With two neuro events in his short years, we weren’t taking any unnecessary chances. Some of this was a humble reminder we are not as young as we once were, he is no longer the young athlete in peak physical condition anymore, and that is well, not a fun realization!

Perspective

We are endlessly grateful for the prognosis Jay had…again. We recognize medical events are scary and there is no guarantee. In my first post I referenced sharing with two other wives who had medical traumas with their husbands. While there is certainly solace in sharing our experiences, we all three had different outcomes.

Life is unpredictable. We focus a lot on trying to raise the kids to be good people, beyond all else, we want them to be kind. We found kind and good people throughout Jay’s medical trauma. My dear friend calls them God winks, and she’s absolutely right. We are forever grateful to the incredible support we felt as our family experienced this. 

Connection

I began this original post with reflecting on my shared experiences with two other wives of medical trauma. It’s this awful, yet humanizing connection that is important. We are blessed to have families and friends who stood in when we were most vulnerable. 

When people ask the purpose of my blog, I reflect on the idea of connection. My blog consists of my simple musings, mostly centered on my experiences as a mom, but also as a partner and community member. As I read fellow bloggers’ accounts, I find myself muttering, ‘yep, I get it.’ That is my purpose for sharing my experiences. To connect. To validate. And to make sense.

Edited to add:

In May, Jay had a six month follow up scan that showed the device implanted to cure his brain aneurysm was functioning properly. We wait for a year to check in to learn next steps and to see if he can resume normal activity. We are endlessly grateful for your continued thoughts, prayers, and check ins as we wait for the next scan. 

While 2022 ended in ways that felt defeating and overwhelming, 2023 has largely been a return to ‘normal’ for our family. Thank you to all those, too many to name, who have reached out and shared your prayers for healing, shared your connections to our experience, and read along as we processed this ongoing medical event. 

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