Thank you so much for the outpouring of caring. Reading all the notes made me teary and grateful for all of the wonderful people in my beautiful daughter’s life. I’ll try to update every day, but sometimes it might be hard.
Things are changing quickly. After a traumatic couple of days, Caitlin was relatively stable in the ICU yesterday. Late last night, I even texted a simple “things are good” to a few people.
But part of Caitlin, I think, believed that she “lost control” over the weekend, and caused herself to end up on ECMO. Yesterday she was trying to do everything she could to control her situation, control her life. She was talkative, questioning, in charge and speaking her mind, and also quite funny.
She’s always been her own advocate, but she pulled no punches. When someone did something wrong: “You should have known. Don’t do it again.” “I usually say please and thank you but I can’t waste the breath.” To the attending ICU doc who was part of the ECMO procedure: “I like you. You’re good.” To the annoying resident who started to examine her: “You just touched your hair, change your glove.” To the nurse last night: “You’re good. I bet you’re a Capricorn.” “I am,” he said. “I bet you’re good with money.” “I would be if I had some.”
But she wasn’t herself, spoke in a flat, blunt, odd way, and that was beginning to alarm me. Still, I reasoned, she had been through a lot. I hoped she would sleep and come back to herself. She did not sleep. Instead, she became increasingly hard to talk to and would not stop talking. She took my new brown notebook and began to write, constantly—- ideas for her care, new plans, instructions for all of us, lists, trying to account for every day, every hour. Her heart went into SVT again, and she had to be shocked again. By 4am, she still hadn’t slept and was no longer making sense. It wasn’t even like she was Caitlin.
Sleep deprivation on top of trauma. What a combination.
We had promised her we would stay close to her the first night, and we did, but by 5:30 am it was clear we were doing more harm than good. Nick went to sleep in the family room, where I’d managed to get about 6 hours “rest” on a chair. I went home and showered. I was almost back to the hospital when Nick said she still hadn’t slept and was still writing as fast as she could in the notebook and that the team thought it best we not see her for a while.
We talked to the attending about the fact that her condition was no longer stable. We talked about options. Shortly thereafter, the attending called us back and said the team had decided to intubate her. That allows her to breathe on a ventilator to rest her body/her lungs. Tomorrow they will put in a trach (which she would have likely gotten after transplant anyway.) The trach lets them have easy access between her body and the ventilator, and access to her airways. She’s having trouble coughing, so this will help. Tomorrow, they are also going to do a bronchoscopy, where they go into the lungs and clean them out. None of this is ideal but it’s now necessary, and it’s common, and it saves her life for now.
A while later, her wonderful nurse called (I need to clone this nurse) and explained that Caitlin was finally resting but told me, with honesty and compassion, about how out-of- control and combative Caitlin had become. I’ll spare the details but basically, the kitten had become a thrashing, panicky tiger. Erin, God love her, said, “Right before sedation, I told her, ‘Caitlin, I don’t care what you say or do. Right now, I’m going to save your life.'”
And that seemed to get through to her.
Now, on the vent, she can be a bit more sedated, and as comfortable as possible… and hopefully her new lungs her surgeons have promised will be inside of her soon.
I want to weep with gratitude for this hospital, the only one in the country that will accept such high-risk transplants, the people other hospitals have rejected because the transplants might fail and mess up their shining success statistics.
The good news? Remember yesterday I wrote about that other family from MA? The young CF woman had also been intubated and on ECMO and had even been on dialysis before transplant. Well, last night I went up to the terrible cafeteria because I was desperate for something to eat and there they were! The mother and daughter, the daughter on her feet, walking around ! 3 1/2 weeks after this same trauma, after transplant. I felt like I was seeing an angel.
–Maryanne
9 Lives Notes 
Keep looking for angels. We will keep praying for you and Caitlin.
Thank you for sharing these updates! Sending so much love and strength to Caitlin. I’ve always admired and adored her feistiness.
Keeping your entire family in my thoughts. My 20 year old son’s lungs live on in another, someone who breathes freely after a lifetime of struggles because of CJ. I truly hope that another family chooses to give Caitlin a second chance at life despite what that means for them. Losing a loved one is never easy but knowing that my son gave the biggest gift of all helps make sense of death.
Erin is THE BEST nurse in the CTICU. We 💜 Her!
Love, hugs and prayers to you all!
Hi, Maryanne. For some reason, I seem to have trouble posting on the blog space, but I wanted to let you know I am thinking of you all, and hoping and praying for Caitlin. I’m glad she is a tiger, because it takes that kind of willfulness to power through. Still, I am so sorry you are all going through this. Let’s get those new lungs, stat. xox, ~Kate
Kate Whouley http://www.booksincommon.com 508-771-4127
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The collective strength of the O’Hara family is amazing. All of the positive energy we all have should be channeled to Caitlin.
We’re all praying and sending our best wishes!!! Haven’t stopped thinking about all of you. Keep fighting Caitlin!!! xoxoxoxoxo
Love and prayers surround Caitlin. You are surely surrounded by angels there, may they keep watch with you and bring you strength.
Love you all and our prayers continue to be with you.
I love you guys so much. This is the really hard part, but you’re getting through it. Continuing to devote every good moment of my days to Caitlin, and continuing to text her occasionally because I can’t not. I miss my friend and can’t wait to have her back. Love and hope and positivity to you all. Hang in there.
Just wanted to drop a quick note to let you know Caitlin’s prayer circle has extended to people you and she don’t even know…
There are no words, but plenty of emotions – fear, anger, despair, frustration, and hope – all jostling against each other in my heart. I think if you all every minute of every day, praying, hoping, sometimes swearing.
I blow a kiss every time I drive by your house. I pray that lungs, the right lungs, find their way to our precious girl soon. And I pray for the eventual donor’s family as well.
Sending you much love ❤️
How wonderful to see those beautiful people at then end of these 24 hours. Hope, hope, hope always. Prayers and love.
Praying that this is foreshadowing in the best possible way! Sending love and daring to be ferociously positive.
Maryanne, thanks for writing this. It can’t be easy to do, but it certainly allows us to fully appreciate what Caitlin is going through. We’ll keep the positive thoughts and prayers coming until she’s well on the road to recovery with new lungs and a brand new life. It’s coming! Tell her to hang in. We love you all 💗
Chris
I second Erika. Hope, hope, hope as an action verb.
Thank you for the updates, as hard as they may be to write. Sounds like she has the best team she could have surrounding her. I am constantly thinking and praying for you all! Much love, Victoria
Maryanne & Nick,
My words seem so trivial compared to what you guys are dealing with. All I can offer are my prayers to support you thru this journey. But prayers can lead to miracles & that’s what I’m praying for.
May God bless you all & deliver you a miracle!
Xoxo, Mj Hamilton
Maryanne, my heart is aching. I don’t know what else to say. I am praying for you. Love, Carol
Sent from my iPhone
Wow. Just wow. Beyond brace. You are all so inspiring. Ferociously positive. I’ll forever have that new phrase in my vocabulary, in my consciousness, in my heart. Sending you my best and in fact everything I’ve got,
Pat
God bless you all. Positive thoughts and prayers being sent.I’ve updated my prayer chain for Caitlin — they’re all praying.
Love,
Paula
Maryanne thoughts and prayers with you all every minute of the day. Fingers crossed lungs are coming soon x love to all x
Maryanne thoughts and prayers with you all every minute of the day. Fingers crossed lungs are coming soon x love to all x
Still praying for you all . What can I say only we love you all so much. Caitlin is such a strong and wonderful niece, such strength to fight all these years. Please God she will pull through one more time for the final reward of her new lungs xxxxxxxxxxxxxxxxxxxxxx.
God bless you all xxxx
I think about you all every day – often – and last night Doug and I were talking about you all and how much and how fiercely we hope lungs are flying their way to you soon. Thank you for the update… oh how I remember that craziness in the hospital and how scary it was to watch the person you love not be her/himself anymore. I’m glad you’ll have the sedation now – best for all of you! xxxx
Storming heaven with prayers for Caitlin. Love to all of you.
Karen Daly
Hold on to that, Maryanne. You’ll be seeing your own very angel on her feet very soon. Prayers for so many. Caitlin, you and Nick, the donor and donor’s family, medical team….
We’ll talk soon. My coincidental and simultaneous prayer for Caitlin during her first night of trauma while having to be shocked was quite revealing. I had gotten to bed very late. In all the years I have prayed for Caitlin have I ever had this sense of something gone wrong. It was powerful, odd and disturbing. Next morning, I skimmed my emails to see your blog “in ICU”. Mysteriously, I already knew there had been a crisis. I had hoped it meant her new lungs were on their way. Strange and a bit overwhelmed by the experience (I’ve had other unrelated experiences so it kind of wigs me out). I do feel, especially with all this hard praying from so many and Kitten’s amazing will and direction, those lungs are near. Feel it, believe it.
Sending love and light. ❤️️
Oh, Maryanne!! So distressing and stressful — this made me cry for you and your family, and Caitlin too. Still praying, sending love, holding all of you in my heart and mind.
Maryanne, I am very grateful for this update. It is at once horrifying and beautiful to read. Caitlin is so prevalent in my mind. God bless her and you and all of yours and the professionals who are trying to help. May I share this update to Facebook? I know my sister and my niece will be grateful for an update.
Positive Thoughts and Prayers for Caitlin and you, her family, for strength.
Dear Caitlin and Maryanne, I am holding you in my heart and prayers, and sending you fresh air from Maine, full of fragrance of balsam coming from our small tree which is beginning to sparkle with tiny colored lights. Walter has just started to wind the strings of lights onto the branches, and the glow spreads through the darkness, and cheers us and our neighbors, and we wish this for you too. Much, much love from us both, Anne and Walter Gamble
What strength and courage you three have. My heart breaks for Caitlin and you as you face such difficult circumstances. ❤️❤️❤️😘🙏🙏
Prayers for you and your family, Maryann and Nick. Love, Tim and Rebecca (Cindrich) Haggerty.
Prayers for all of you that the right lungs arrive shortly. I so admire your strength and determination. You are role models of what being a family is all about.
You are all in my prayers and in my heart. Caitlin is a fighter and I am in awe of her strength.