When we were in the hospital with Reagan, we had the most amazing nurse, I’m going to call her Kate.
Kate had the most incredible demeanor. She was calm, always smiling and confident, she was the exact opposite of how we were feeling.
After Reagan’s metabolic crisis, Kate helped us set up a conference meeting with everyone working on Reagan’s case including the Dr. on the floor, another Dr. who was basically in charge of the children’s hospital, our genetics Dr., the hospital social worker and the neurologist. The purpose of the meeting was to ask all our questions about our daughter Reagan’s new diagnosis (which was complete basal ganglia damage and loss of all her skills up to 13 months due to a metabolic crisis) and to discuss what we were supposed to do now in caring for her and what we could expect moving forward. We had three pages of questions. Kate is the one who watched Reagan during that tough meeting.
Kate would take Reagan on walks around the hospital floor and rock her to sleep when we went to the Ronald McDonald house. I’d call Kate first thing in the morning to see how the night went.
One morning, Kate took Reagan to a staff meeting with all the nurses, the Dr. and the resident so she could be with people. So when Rob and I walked over from the Ronald McDonald house one morning at 6:30 a.m. and couldn’t find Reagan, or any nurses…we walked the floor (slightly panicked). I saw Reagan’s stroller peeking out of the cracked conference room door, the same conference room we were in just a few days ago asking all our questions. While we were grieving over a new diagnosis, Kate was helping us with our hope.
I asked Kate if there was any way we could give Reagan a bath…not with hospital bath wipes, but a real bath. As I wondered logistically how a bath in a hospital bed would work, Kate burst into action and knew exactly what to do, how to keep Reagan warm, how to keep the bed mainly dry…it was amazing. When Kate wasn’t working, I asked another nurse to bathe her…I ended up taking over, Kate just knew how to do it best.
Kate also got us a bigger (private) room with a private bathroom, closer to the nurses station. When you’ve been living at the hospital for about three weeks, this is a HUGE deal.
Not only was Kate the most incredible nurse, we just loved talking with her. We told her all about our dog Bauer at home and how Reagan was probably missing him. She told us that we could bring our dog to the hospital…what a game changer. Kate provided us with the necessary hospital paperwork to get him up the elevators past security, and our neighbor took him to the vet for any shots he was due and to the groomer. When Reagan laid eyes on Bauer, it was the first she smiled in more than a week.
And, it was the first time we saw actual life spring from her body since being admitted for her crisis. She cooed, she made sounds, she smiled, she had a little laugh. She was in Heaven. Bauer stayed for several hours and I truly think he provided a link for Reagan to cling on to. She remembered him, she knew that she had tons of love from us, from our dog; we would do anything for Reagan.
Our dog and our daughter have a connection. Bauer makes her laugh, he’s soft, he’s furry, he’s friendly and he’s exactly what everyone needed. Because of Kate, our healing was able to begin. We didn’t know it then, but looking back, it’s obvious to see.
After we were discharged from the hospital, we connected with Kate on FaceBook and she followed along with our journey. We were mentally exhausted and she saw a need. She offered to babysit Reagan out of the blue, so that we could have a break. Wow! A PICU nurse is willing to babysit? The first time she came we asked, “So how often does this happen?” Her response, “How often do you want this to happen?” Not realizing that what we were really asking was how often does a PICU nurse actually come back to babysit a patient? Not often, we all surmised.
That first date night Rob and I pulled out of the driveway and just looked at each other and said, “this is crazy!” We were driving away, leaving Reagan with someone we had only really interacted with at the hospital. But we weren’t leaving Reagan with just anyone…we were leaving her with Kate. The Kate that loved on our daughter, our family and the parade of people who came to visit during our hospital stay. Reagan was with Kate and Reagan would be more than OK, she would be great.
Kate has watched Reagan many times since and Reagan just loves her. Kate is more than comfortable administering medication, using Reagan’s Gtube for her feedings, bathing her (in a real bath tub) and putting her to sleep. She’s even taught us tricks to help her go to sleep.
Rob and I couldn’t figure why Kate would want to do this, for us, for Reagan. We came to the conclusion that she’s just one of the most amazing human beings out there. She told me that she felt a connection to Reagan in the hospital, and that when she saw her reaction to Bauer, she knew Reagan would be OK. We are so thankful to have Kate in our lives and will always be forever grateful to her.