My stepson was hospitalized at the U of M hospital for almost 3 months after having a heart attack, which resulted in a severe brain injury, and I stayed in the room with him almost the entire hospitalization. His brain injury caused him to have a lot of neurostorms. The medications would work to stop the storms, but he would then grow a tolerance to the meds, and the neurostorms would start again. This was very difficult to watch my son go through, and it was draining for me to go through this with him around the clock.

Every 12 hours, there would be a new nurse assigned to him, and it was so hard to start over with a new nurse who was not familiar with his case. After approximately two months of fighting to save his life, the doctors told us there was nothing they could do to help him and that we needed to consider his quality of life. This was the worst decision any parent could make, but we made it. We then had to go to court to get clarification around the decision we had made, which extended the time he suffered with more storms, before moving him to palliative care. During the last month of his hospital stay, we had a day shift nurse who was assigned to our son for the first time, and his name was Joe.

When Joe started his shift, he came in and introduced himself as all the other nurses did at the beginning of their shifts. Joe explained that the night nurse had told him about our son’s rough night, and he wanted to assure me that he would do whatever he could to make sure that our son didn’t also have a rough day. Joe asked me about any concerns that I may have had, and I talked to him about my son’s frequent storms and the problem with the meds not working, causing the escalation of the storms. I explained that I had been up for several nights with no sleep, sitting by my son’s bedside for a couple of months. I broke down crying, telling Joe that I was tired and just wanted to sleep. I explained how I was up all night during his storms, and then during the day, the nurses and doctors were a constant stream in and out of his room, causing me to feel exhausted both mentally and physically. Joe listened and thanked me for letting him know my concerns. Joe then asked me to try and get some sleep during his shift that day and assured me he would be taking care of my son if he showed signs of starting to storm again, and that is just what Joe did!

I lay down on the couch in the room, expecting a doctor to walk in and wake me up as I was falling asleep, but that did not happen. I woke up after a few hours and noticed a sign that Joe had posted on the room door, “Please see nurse before entering room”. Joe had posted this sign to reduce the number of people entering my son’s room, allowing me to get some much-needed rest! If my son moved at all, Joe came into the room to make sure he wasn’t starting to storm, and when my son was incontinent, Joe wouldn’t let me help clean him up; instead, he would do it himself or call in other staff to help him. This is something I had not experienced before, as Joe let me be the mom, and not my son’s nurse. Joe also started advocating for me and my son. He started asking to be assigned to my son and always reviewed his chart to make sure everything was updated, and that helped lessen the confusion for the night nurses caring for my son.

My son was a huge SpongeBob fan, and we frequently had SpongeBob on the TV in the room. One morning, Joe showed up in a SpongeBob T-shirt! Joe had worked 13 hours the day before, and after leaving his shift, he took the time to go to Target and buy a T-shirt to wear the next day at work. On the days that Joe worked and couldn’t be assigned to my son, he would still stop in and check on us. After we received the court judgement to move forward with palliative care, Joe let us know that he previously worked as a hospice nurse and asked if I had any questions. I had tons of questions and concerns, and Joe took the time to sit down and talk to me all about Palliative care.

Joe started to work more shifts to care for my son as his condition worsened. He paid attention to my family and helped the entire family find a way to go through this devastating time in our lives, as he was truly looking out for my son and our family. Joe was my son’s nurse the day we moved him into the “transition” room, and he stayed over his 12-hour shift to make sure we had everything we needed. My son died that night, and all I could think of was how I wished Joe were there because he would know what to do. I also felt that if Joe had been there, he would have closure for all the love and dedication he put into our son and family! My son was hospitalized for 93 days, and throughout the 93 days of hell we all went through, we were extremely grateful to have someone caring for our son that was truly looking out for our son and his family’s best interests.