The Angel (Disguised as a Nurse) Who Helped Us Say Goodbye to Courtney

"The trained nurse has become one of the great blessings of humanity, taking a place beside the physician and the priest..." ~ William Oster

I've been wanting to write this blog for months now. But it meant revisiting the worst day of my life. And I didn't know if I had the strength. But, it's National Nurses Day today and I cannot think of a better day to honor the angel (disguised as a nurse) who stood in grace and compassion with us the day we said "goodbye" to Courtney. 

I obviously reflect on that day so often. I was talking to Josh on Courtney's birthday last week and he said, "I remember every single detail of that day" and I told him that I did, too. Every. Single. One. So I remember, after getting a call from the overnight nurse that Courtney had been unresponsive most of the night, walking into the ICU and meeting Taylor outside Courtney's room. Taylor was assigned to Courtney for that day. I know a lot of nurses at Dartmouth-Hitchcock from the 25 years Courtney had been going there. And I knew a lot of the ICU nurses because Courtney had been there for 2 months. But I had never met Taylor. Until that morning. 

I am not a big "everything happens for a reason" person which I'm sure I've mentioned before. And I am spiritual in some ways but not religious. But, I do look back now and I think that the universe knew that losing Courtney would be the single-hardest moment in my life. And so some cosmic force decided that I deserved an angel to watch over me and all of us that day. So Taylor was inexplicably assigned to a patient named Courtney Lane Gaouette. A patient who had been on a breathing tube for 2 months. A patient who was fading away. A patient who had fought so hard but was now ready to go and who had found the strength the day before to request to be on comfort measures only. Who was now mostly unresponsive. Taylor never took care of Courtney and didn't know her - or me. But she was meant to be with Courtney that day and she was meant to be with all of us that day. 

I honestly and truly believe - to my very core - that Taylor is one of the biggest reasons that I was able to move on with my life after Courtney's death. That I am able to even remotely function today. That I am not irrevocably and hopelessly broken. My family and I have spoken about this at length and they also feel that Taylor made the difference that day. The difference between us being further traumatized by what was happening versus what actually happened; that we were shown compassion, kindness, expertise, guidance and humanity which gave us the courage to do what we had to do and the peace to live with it. 

The minute I met Taylor, I was struck by her gentle yet efficient manner. And I instantly trusted her. I don't trust easily, especially when it came to Courtney's care. So this was a huge relief for me. I was absolutely terrified because of the phone call I had received from the overnight nurse. That Courtney had been mostly unresponsive. I was trying to stay calm as I spoke with Taylor so I could understand what she was telling me. I can't remember her words exactly but, from what she said, I knew I was at a medical crossroads. I said to her directly, "Is it time for me to decide to let her go? I'm her health care proxy?" Taylor didn't hesitate, didn't try to sugar coat it, and simply said, "It could be." I needed someone to say that to me. I needed to hear those words - and I trusted her so I didn't have to give it any more thought. It allowed me to instantly become focused so that I could plan my next moves. Taylor told me that she would ask the ICU docs to round on Courtney's room first that morning so I could speak to them directly. She assured me she would be in the room with me. And I was instantly comforted. I thought, "I need her here. I need her to help me right now." Without Taylor,  I would have had no one with me at that point and that thought alone still scares me.    

The ICU team came to Courtney's room and the ICU doctor did verify that it was my decision and that letting her go would be a reasonable decision given her current condition. So I called Josh, Jim, my parents, Courtney's mom...and told them to get up to Lebanon. I texted Courtney's CF Team - her beloved medical family - and told them today was the day. I knew they would want to be there. They were at Courtney's door in what seemed like mere minutes. Through all of this, Taylor was keeping Courtney comfortable, giving her meds to ensure she was, in fact, "comfortable" and was communicating with me the entire time. At one point, Taylor told me that Organ Donation was on the phone because Courtney was an organ donor. Of course she was, I said. I hadn't even known that. But Courtney had a golden heart so of course she would want to donate. 

Courtney knew she would probably be too sick for donation of her major organs so she had specifically requested that her skin...and her eyes...be donated. Oh, god, her eyes. Her beautiful blue eyes. I could barely keep it together after that. Turns out that the organ donation process is quite complicated and there are quick decisions that need to be made. And I could barely think. Taylor explained all of it to me, gave me some options, gave me some time to think and then acted as the liaison with the organ donation doctors the entire time. 

It turned out that Courtney's blood was infected so she was not able to donate anything. That would have made her so sad. 

Taylor delivered a tray of breakfast food and coffee to us. Later there was a platter of cookies brought in. Simple, yet touching gestures, to keep us as comfortable as possible. She never, ever pressured us for a time line for anything and just warmly greeted all of Courtney's family members as they came onto the ICU floor. She asked me before she did anything to make sure I was okay with it. Many of the nurses and staff who had known Courtney for 25 years wanted to come in and see her. Taylor asked me before she agreed to it. I told her these were Courtney's family and I knew Courtney would love it. Taylor made sure that I always understood everything that was being done - down to the med orders and the bags she was hanging from her IV pole. 

At one point with all of us in the room talking with Child Life about how we would tell Carson that his mom had died, I turned around and Taylor was in tears. I just instinctively hugged her. And it felt so comforting - for her, too, I hope. She said, "I'm so sorry. I've never cried like this before in a patient's room". I told her that it was making the whole horror just a bit easier for me because she was validating that Courtney was a person to her, not just a patient. And that her life mattered. And that everyone should be sad that Courtney was dying at only 25 years of age and that Carson was losing his mother. I told her that there are some great nurses at Dartmouth-Hitchcock but I could not have had a nurse who was efficient yet detached. Not today. Not now. 

At one point, my dad asked me if I had thought about getting a piece of Courtney's hair to keep. I am so grateful to him for mentioning that because I never would have thought of it and would have regretted it later. I asked Taylor if this is something we could do. She said we could and that she would take care of it for me. Later when I went into Courtney's room, I saw that Taylor had taken Courtney's hair out of the french braid it had been in for a month and had positioned it so that it was flowing all around her. And I was so moved by that gesture that I burst into tears. I thanked her and told her how much Courtney loved her hair and that this was what Courtney really looked like. Taylor said her hair was pretty knotted from being in a braid for so long but that she was able to secure a piece for me. She handed it to me in a plastic medical baggie. The lock of hair had just a trace of the purple that we had put in months earlier. It was perfect. 

At the very end, Taylor stayed with Courtney - and with us. She helped to remove the trach and she administered all the medications. I trusted her so I never once had to worry about whether Courtney was in pain or if she was aware at all. Because I knew Taylor would never have let that happen. Afterward, she told us we could stay with Courtney as long as we wanted. No rush at all. We left for a few minutes and when we came back, I noticed that Taylor had arranged Courtney so her head was on a pillow comfortably and her purple fuzzy blanket and hospital sheets were all neatly arranged. She looked like a sleeping angel which was the last picture I have of her in my mind. It was the last time I would ever see Courtney. That is one of the many gifts that Taylor gave us that day. 

But, Taylor wasn't done yet with her gifts for our family. She found me on Facebook and reached out to me to ask how she could make a donation to Courtney's GoFundMe for Carson. I was so thrilled to have the chance to thank her profusely on Courtney's behalf, mine and all of us who were there that day. It felt so good to be able to tell her the difference she made on such a devastating day in our lives and that I would never forget her. And then, she sent me a letter with a check. The check was incredibly generous but it's the letter that I will remember for the rest of my life. 

I really hope Taylor doesn't mind me doing this but I need to share some her exact words from that letter: 

"I first and foremost want you to rest assured that after you all left DHMC, an LNA and I went into the room to take care of Courtney. We got her hair all untangled and brushed it out beautifully. It truly was like looking at an angel. She looked so peaceful, comfortable, safe and at rest. And I wanted to make sure you knew that. 

It truly was the greatest privilege of my life to be there with you all. It was so apparent to me how much you loved her and how much she loved you. The bond you had was palpable in that room. The love, compassion, tenderness and strength you shared with Courtney was admirable. I know you know this already but you and your family did absolutely everything you could for her and I'm amazed by the bravery you showed on that day to follow through with Courtney's wishes. She was loved deeply and dearly by everyone in that room. You already know this as well, but Courtney has got to be one of the bravest humans I've encountered. I know that I was only 12 hours in Courtney's 25 year journey but you all have a lasting place in my heart. 

I hope that as time continues to pass, you find peace, Lisa."

Taylor gave me the peace that I so desperately needed after Courtney died. And she was the only one who could have given it to me. Leaving that hospital room for the final time was probably just as hard as watching Courtney draw her last breath. Courtney was always so afraid to be left alone. But it was time for me to leave and I felt, not only sad, but like I was abandoning her. Taylor stayed with Courtney when I couldn't. So Courtney wasn't alone. And she did all of the things that I would have done for Courtney. All the things that Courtney would have wanted done. And then she took the time to write me a letter to tell me about it. She didn't have to give me all of these gifts. But she did. And it has made all the difference. It had to be Taylor that day. It was meant to be Taylor that day. And, most importantly, as I have told Taylor countless times...Courtney would have loved her! 

So on today of all days, I say "thank you" from the bottom of my heart to Taylor  - and to all the nurses who routinely go above and beyond to care for their patients and their patients' families. Taylor called it a "privilege" to be there with us on Courtney's last day. But it was our privilege - and a blessing - to have her there with us.