Primary Nurse Kristine December 24 2014, 4 Comments
Bryer had recently been moved BACK to the NICU after a short 4 day homecoming followed by a one week admission to the PICU. Our group of neonatologists lobbied to get him and we were happy to be back in familiar territory. He wasn't in good shape. His breathing was labored, he was overloaded with fluid and he was in constant discomfort and agitation. With all the back and forth and ups and downs, December was an absolute blur.
We decided we wanted to make Christmas as normal for Remy and Sander as possible, which would mean Justin and I's presence at the same time on Christmas Eve and Christmas morning. To make this happen, I had to give up some time with Bryer. I ached thinking about not having him in my arms while Remy and Sander tore open gifts. But, we worked out a coverage plan so Bryer would not be alone. Between Justin, my dad and I, we'd be there. My mom had to work a 12 hr night shift of her own at St. Ann's, so she was out of the mix, but managed to sew him a little stocking she sent down with my dad Christmas Eve. It was hanging when I arrived Christmas afternoon. <3
My poor Dad aka Papa drew a bad shift. I think he was looking forward to rocking him all afternoon while reading Christmas books and singing carols. But, poor Bryer could just never catch a break. He was in a fit of pain and I don't think he settled but for a few minutes the entire time my dad was there. Which put my dad in a tizzy of nervousness. God Bless him, we typically didn't call on him for such long shifts and rarely if ever 2 days in a row. My dad is a tall man and those cribs are small. If you weren't holding Bryer then you were hunched over the crib. At 5'9 it's back breaking and exhausting when doing it hours on end. At 6'7, with a knee that needed replaced, he was a trooper. Love you dad!
*Here's a fun fact about my dad. He used to lead music, yes you heard that right - LEAD MUSIC - at our old church growing up. He is an encyclopedia of old hymns and I think he sang every one of them to Bryer over the course of his life. <3*
Queue Kristine, the inspiration behind this post:) She was assigned to Bryer for the first time that Christmas Eve and happened to be working a 16 hour shift. She drew the short stick too. Bryer had her running ragged. I spent a few hours with her that Christmas Eve morning and then again the following evening, so I saw first hand. For Kristine, it was a crash course in all things Bryer.
Kristine displayed such diligence and attention to Bryer's comfort during those grueling hours. She dug right in. He wasn't easy, but she didn't concede. Getting him comfortable was her top priority. It was tri-noted by my dad, Justin and I. My dad was amazed and spoke so highly of her in his report to me over the phone on his way home Christmas Eve. I had also noticed how impeccable she was with Bryer's cleanliness and she brought such order to the room. I loved that. Simply put, she was a rock-star nurse and I wanted her on our team. A team we hadn't officially put together. Yet.
Justin called late Christmas Eve from the cafeteria to give an update. We talked longer than usual as I was filling him in on home happenings and likewise he was relaying the latest with Bryer. But moreover, we talked about Kristine. In the midst of trying to help Justin get Bryer settled, she offered up some advice and possible explanation for his pain. Drawing from her own experience with a g-tube (feeding tube inserted directly into the stomach), she talked to Justin of what discomfort that can create which segued into a very natural conversation. She shared with him a little about a car accident she was involved in many years ago which left her in a coma, riddled with injuries and on a long road to recovery. An accident that took the life of her almost 5 year old son, Rusty.
Can I pause for a minute? That last sentence is so heavy. It did not flow from my fingers easily. It's so much more than just words in a blog. It's Kristine's son. Rusty, you are not forgotten, dear sweet boy, not even by me who never was blessed to meet you.
I remember Justin relaying this information to me that night…we both sat on the phone, completely gut-checked.
"Can you ask her when you get back upstairs if she'd consider being a primary nurse for Bryer?" I asked Justin.
At this point we hadn't made a list of primaries, and it was apparent we weren't going anywhere soon and we needed them for consistency and our peace of mind. Thinking back now, I recognize this was rather a quick time frame to extend such a request or invitation if you will. But I had seen enough to know, I needed her as much as Bryer did.
She kindly accepted.
It was around the 2nd week of January 2013. Her and I had developed a comfort level. A seed of friendship had been planted, and I felt I could ask. So I did. I asked her about Rusty. Knowing what I know now about having lost a son, she was probably bursting at the chance to tell me about him:) So over the course of the day as time allowed, she shared with me about Rusty, the accident, his death, her recovery and her grief. She talked about her journey and resolve to become a nurse after yet another life-altering car accident involving herself and her remaining child, Tabetha. I know, it's almost too insane to be true, isn't it? It's a remarkable story of resilience. An incredible story of a single mother who clawed her way out from the pits of grief and pulled herself up by the boot straps from debilitating physical injuries not once, but twice, to be standing where she is today…which happened to be right in front of my son's crib as his primary NICU nurse at Nationwide Children's Hospital. Amazing.
Around this time, we were in the middle of waiting for test results for a plethora of Lysosomal disorders, which at the time was looking like a big possibility, all of which had a terminal prognosis. They were nearing the end of what they could test for and none of us knew Bryer's trajectory. Every disease or syndrome they tested came back negative. But, he wasn't growing or gaining weight properly, along with some other issues. In fact, there was a week where he began losing weight despite the added caloric intake. The Dr's were left scratching their heads. I remember asking in rounds one morning, "Is he dying?"
Anticipating results any day, I sat rocking him one afternoon. It was dim, perhaps the curtains were drawn shut. I had death on my mind mixed with the thought of having to say good-bye to him someday and maybe soon? I had absolutely no idea. Kristine was on. She had another patient so she was in a out. I watched her work.
I saw that she was still living, breathing, working, smiling, helping, caring despite what she'd experienced and despite what she had lost. If she could do it, so could I. Words are failing me to explain what that meant to me in those moments.
Again, God is so good about knowing what we need. He knew that as a mother on a path to losing her son, I would need her as a fixture in this journey. I later came to realize, maybe she needed Bryer too.
Actually, it's one of the most beautiful parts of Bryer's Song. At least to my ears anyway.
I look forward to sharing that part of the story soon, but for now I must say, "TO BE CONTINUED" as there are still far too many gifts to be wrapped by these fingers tonight:)