The Beginning of the End

                                                              "Fly, fly, precious one;

Your endless journey has begun;

Take your gentle happiness;

Far too beautiful for this;

Cross over to the other shore;

There is peace forevermore;

But hold this memory bittersweet;

Until we meet.   ~ "Fly" (Celine Dion)

I told you I would start with the end first. And I've put it off long enough. But, as I think about this, I don't think the end can be fully understood until I tell the steps leading up to it. I'm hoping that writing about it all will release some of the horror of it for me. I doubt it. But I'll try anything at this point. 

I thank you in advance for being willing to read this because there is no way you will be immune from taking on a piece of my pain as you hear the full story. And, just a friendly warning, it may stick with you forever. So read at your own risk. I'm asking a lot of you. I know this. It may take me a few blog entries to tell the entire story. Because it's a long story that took a few detours. And I want to make sure that I do it in a way that Courtney would want and in a way that honors her and respects her. Because that's another promise I made to her. 

Courtney knew she was dying. For two months, she knew she was dying. There were glimpses of hope sprinkled in there along the way but the hope was slim. Courtney was lucid and aware and still her brilliant, medically informed self. And she was a realist. Always, and until the end. 

For those two months, Courtney looked and acted just like Courtney. She was completely herself, except for the tube breathing for her. This is what is the hardest part of this story. Courtney wasn't brain dead. She wasn't on drugs to keep her comfortable and "out of it" - at first. She said to me at one point (and I had to admit that the thought had crossed my mind) that she wished she had never come back from the cardiac arrest. That she wished they hadn't brought her back. That they hadn't saved her life. Courtney said she knew the moment her lung collapsed, she knew it was very bad, she screamed out to the nurses for help (she was in the hospital at this time) and then everything went black. She said that she wished that had been it. And I can't blame her. I go back and forth about what I wish.   

A week after her lung collapsed and she went into cardiac arrest, I arrived with Jim and my parents at the ICU. Trauma is like some miracle memory drug - which actually sucks for obvious reasons. You can remember clearly every single minute of every single day when you're in this heightened state of hyper vigilance. I can't remember what I had for dinner last night but I can tell you that this day was a Saturday. Josh was there in the waiting area and told us the doctors - including Courtney's primary CF doctor - were attempting to remove Courtney's breathing tube. Wait. What? Yay! Another step closer to recovery and healing! She can eat! She can talk! She's going to be fine! Five minutes later her CF doctor - Dr. Gifford - came out to tell us the tube was out and all seemed to be going well when he left her room. Elation. Elation washed over me. Elation and relief. And joy. This is going to be over soon! Smiles all around. High fives. Josh got permission to go in and see her. 

3 minutes later. A text from Josh. "They're putting the tube back in". 

I didn't know yet. But this was the beginning of the end. One little gem of medical knowledge that I learned through all of this was that if a breathing tube stays in too long, your brain forgets how to send the messages to your lungs on how to work. I thought that once the hole in Courtney's lung (that caused the initial major collapse) had healed, the tube would come out and her lungs would start inflating and deflating again. Nope. I will dub this "Terrifying Realization #1" for me in this 2 month ordeal. 

Courtney was awake for the extubation and understandably petrified by losing the tube and then having to hope to breathe without it. Courtney's worse fear was to suffocate to death. She told me this countless times. Breathing for all of us is obviously more difficult when you are anxious and stressed. So, the anxiety was a huge factor. The tube had been in for 5 days already which was another factor. Courtney was breathing on her own with the tube out but her respiration rate was high. She was struggling to breathe. They gave it some time, hoping everything would stabilize but the carbon dioxide building up in her lungs got to a dangerous level. The doctors and the respiratory therapist felt they had no choice but to intubate her again.Courtney was devastated of course. As were we all. 

The next day, I was in the ICU again. I saw Dr. Gifford touching base with the ICU doctors as they were on rounds. We were waiting for the team to round to Courtney's room to tell us what the next plan was for extubating her. Give her less anxiety meds? Have her favorite Respiratory Therapist whom she trusts be in the room? Wean her off the tube slower over time rather than just taking it right out? 

Dr. Gifford left the group of doctors and walked over to me. And his face. His face told me all I needed to know. "The ICU doctor doesn't think Courtney's lungs will ever work again. She can't come off the tube. Ever." My body started shaking in a way that I can't even adequately explain. It was a shaking inside my core. There was a buzzing in my brain. In my head. I felt like I might pass out. Then, "I called MGH and asked them one last time to list her for transplant. They said 'no'. We can try to see if Brigham and Women's will evaluate her for transplant but I highly doubt they will. And if they take her down there, we run the risk of Courtney dying down there. With strangers. Without all of us - her CF Team - who love her and who give her such comfort. But, we need to go in there and tell her about the tube and about MGH. And I'm sorry but, selfishly, I need you in the room with me to tell her this news. I can't do it without you." Tears in his eyes. Tears in her doctor's eyes. I said, "Of course I will go in with you." And I had about a minute to collect myself. 

The saying, "You never know how strong you are, until being strong is the only choice you have" always sounded a bit trite to me. But, turns out, it's true. I couldn't curl up on the floor of the ICU and cry. I couldn't run screaming from the hospital as much as I wished I could. I couldn't go into Courtney's room and become hysterical. Those were not options. So I walked in the room with Dr. Gifford. And we stood by Courtney's bed together. And Courtney stared at us with those big, beautiful, blue eyes as Dr. Gifford told her she couldn't come off the tube. And that MGH said "no".  

Courtney looked at me. Searched my face for an expression. I said, "I will do whatever you want to do". Then she picked up her clipboard and pen and wrote, "I need new lungs". Dr. Gifford asked her if she wanted him to call Brigham and Women's and she wrote, "Yes. I'm not done being a mom yet. Carson is only 7." She didn't write, "Why me?" There were no hysterical tears. No anger, no temper tantrums. Just, I need new lungs and here's why. Let's do this! So Dr. Gifford said, "Then I'll call Brigham and Women's". And I pretended to be happy and hopeful but inside I was remembering Dr. Gifford's words, "...and she may die alone down there, with strangers..." 

Courtney in  ICU the day we spoke to her
about the tube and MGH

I have the notes Courtney wrote over those two months, I saved all of them that I could get my hands on. I just can't bring myself to go through them yet. But I'm sure this note is in there. At least I hope it is. The nurses gave me the first note Courtney wrote when she woke up in ICU after her cardiac arrest. Her face was so swollen that her eyes were shut and she couldn't see. So I don't even know how she managed to write anything. I don't have to see that note. I remember exactly what that one said because I'll never forget it. It was just so Courtney. Concise, business like, wanting information about herself and then, finally, emotion. 1. "How bad was it?"; 2. "Who has been notified?"; 3. "I'm scared". Of course she must have been scared but she always somehow was able to stay focused and strong. Maybe because being strong was the only choice she had. 

   

"Wear your tragedies as armor, not shackles"  ~ Author Unknown