A Healthcare Journey from the Other Side

My job is designing the plumbing and medical gas systems for healthcare facilities, but my story here is not one of technical expertise in healthcare. Instead I want to talk about my personal experience navigating the healthcare system, from a small, rural hospital in western North Carolina to a leading academic medical center in the Southeast.

As is usually the case, our experience hit my family from out of the blue, and soon we were having to make choices more important than any we had made before. It began in the fall of 2018, when my 23-year-old daughter had multiple seizures in her college apartment. She had suffered a concussion during the seizures and was stabilized at her college town’s small, rural hospital before being transported to the larger regional hospital with advanced imaging and knowledge. It impressed me that the rural hospital staff had my daughter’s welfare in mind and did not waste any time transporting her.

Smaller hospitals are vital as they have a broad ability to serve the many general requirements of a community yet also can stabilize patients who require more specialized care. That was the case with my daughter.

Once she arrived at the regional hospital, she was admitted to the specialized neurosciences department for evaluation. With advanced imaging technology, staff discovered that an arteriovenous malformation (AVM), or an abnormal connection between the veins and arteries that interferes with a body’s ability to circulate blood, had caused the seizures. Often the way a person finds out they have an AVM is after they have an aneurysm, which is a very serious event.

The next three nights my wife lived in my daughter’s hospital room, sleeping in the recliner. I also spent two nights sleeping in a metal chair. We were not sure what might happen at any moment and were not about to leave our daughter’s side. The hospital had a small kitchen area on the floor she was on with soups, ice cream, and drinks. We provided these for her when she needed them, which made us feel like we were being useful. Having nourishment close by also freed up nursing staff from having to serve my daughter a snack or drink if she wanted it. There was also a coffee pot and microwave. As parents trying to do all we could for our daughter, this was a great feature at the hospital. The one thing I wish they had more of was a place to rest for more than one parent, not necessarily in the room but somewhere within or near the facility.

I also now understand why hospitals have chapels, as I found myself seeking this place during the dark times when we did not have the answers.

Once my daughter was stabilized and further testing was done, we were given some treatment options. One option was non-invasive, targeted radiation, which could work to cure the AVM but, in her case, might create issues later in life due to the amount of radiation needed. The other option was a surgical craniotomy to remove the AVM immediately. I found myself reaching out to anyone I could for help making the right decision. I spoke with family and turned to some of my own coworkers who had practical experience in the medical field. The decision on the right course of treatment was just as much our daughter’s as ours, and with much thought we decided the craniotomy was the best option.

We left the regional hospital to have her procedure done at a top academic hospital with expertise in treating AVM surgically. The facility is accustomed to treating people from outside the area, so they gave us options for accommodations with negotiated rates. Having housing took the stress out of where we would be staying during her recovery and helped us financially. On the morning of her surgery we were given a pager so we could get updates from the staff. The waiting area contained many smaller areas set up more like a living room with a TV for entertainment. This configuration allowed family groups to be together in a somewhat private setting.

The surgery took several hours and we were updated on how she was doing at various intervals. Once out of surgery she was moved to an ICU room for recovery. This room was quite large, with chairs and even a couch that could be easily transformed into a bed so one of us could be with her at all times. At first only a few of us could see her, but later the size of the room was useful as we had other family members join in to visit.

Thanks to the expertise of the surgeon and support staff, her surgery was a complete success. Still, I hope nobody reading this ever has to go through what we did. I look at what I do here at Haskell much differently now. My job designing the plumbing and medical gas systems for these facilities takes on a renewed importance. After reaching the end of our journey, I am thankful for all the healthcare people who made this a success story for my daughter. She is back to a normal life and enjoying her college days once again.