DECEMBER 5 –In ICU, on Life Support

Caitlin started to feel abnormally horrible on Saturday and began to rapidly deteriorate. Her team couldn’t get her plummeting sodium or elevated CO2 under control. She knew something was seriously wrong with her body, at the same time that she was increasingly out of it.

Last night, around 8pm, they moved her to the MICU to hopefully stabilize her. At midnight, one of the transplant surgeons told us they needed to quickly put her on ECMO, which is a form of life support that circulates the blood so as to oxygenate it and remove the high CO2 levels that are putting pressure on her heart.

The procedure calls for large cannulas that are inserted into the groin and neck.  Her heart went into SVT 3 times and she had to be shocked 5 times. The surgeon told us she wouldn’t remember it, but unfortunately she remembers every bit of it.

At 3am we were able to see her in the CTICU and we are still here. She’s fully conscious, is mostly immobile, but able to talk, with effort, through her oxygen mask. She is still fiercely advocating for herself and telling us we need to watch everything, question everything, for her.

She just asked me to please do a blog post, said, “Need prayers.”

She’s at the top of the list here now. Her score is now in the 90s, and that also makes her a national priority.

Fortunately, we know other people who’ve been through this and lived to tell the tale, so we remain positive.  Early on during this admission, Caitlin said she needed “ferocious positivity” from everyone. There’s actually a young woman from MA here, who was on ECMO and was transplanted in early November and who is doing well. And here’s an incredible one: Thank God for these ferociously positive stories.

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83 thoughts on “DECEMBER 5 –In ICU, on Life Support

  1. woke up this morning and saw the post on Facebook before I got out of bed.
    When I finally got out of bed, I noticed this really bright light out the window and when I got closer to the window it was one of the more beautiful sunrises I’ve seen from our apartment. The sky was a color pink I had never seen before and it was absolutely stunning. It made me feel like maybe my prayers were heard this morning and my positivity was being sent to Caitlin. ❤

  2. Kitten Caitlin, you are the strongest most positive person I know. I believe in you and my thoughts and prayers are with you each and every day. You’ve got this!! Stay strong, know how much you are loved!!! xoxoxoxo

  3. Father God- I lift up Caitlin to you and ask for you to give her and her family
    your merciful presence and healing. Please guide every healing hand that is involved with her care. Give the doctors and nurses wisdom with decisions concerning
    her state of care. Wrap you love and healing around all of them in a very tangible way.
    Please Lord, intercede in a mighty way on behalf of this very precious family. In your
    Son’s name I pray . Amen.

    • Our crew will keep Caitlin and your very special family in our every prayer fiercely and ferociously; keeping the faith for a Christmas miracle. Love, The Waites

  4. Dear Maryanne, Nick and Caitlin,
    Caitlin is in our prayers daily. We have been able to add her to special prayers for healing at our synagogue and also through a Catholic friend’s very strong prayer network. You are all the most positive and strong people! Love Steve and Carol

  5. Caitlin, we are all praying for you to be well and strong again in no time. Don’t know you all that well but it didn’t take me long at all to recognize that you have something in you that knows how to fight and be a survivor. You are an inspiration to us all and we know you’ll get through this soon. Much love Alexandra Cooper (Victoria’s sister) xoxoxo

  6. Caitlin – we’ve only met once – at the Ashland Farmers’ market, you were carrying the little doggie and looked beautiful. We work for your Aunt Cathy and know your mom and dad. We have been following your life’s challenges and always root and pray for you. You must be an extraordinary young woman to be able to be so verbal, so creative in expressing your feelings so openly. You have our admiration for sure. All the best strong lady!!! Marlies and Joop

  7. My thoughts, prayers, and every possible positive spark of hope and light is with you, Caitlin.

  8. Caitlin Thank you dear one for your amazing spirit. Even as I’ve only fairly recently met you, you have deeply inspired me with your words and your life, and have been a great source of light for me and for so many others. This is the hardest part and I know you can do it, and I’m sending all the light i can, and holding the image of you as a strong and healthy young woman walking down the beach next year, breathing in the salt air with your perfect lungs, and blessing us all. Love and Prayers from Jane, your mom’s friend

  9. Caitlin – you have always been a figher – a real force – even in elementary and middle school at Fay. Keep the faith. You keep that fire going, for it has always served you well and drawn others to you. You dig in deep and keep believing! I will continue to pray for you because you are so loved and so admired. You’ve got this!!!

  10. You have been foremost on my mind since I awoke this morning, Caitlin. Thank you for your wonderful blog posts. We have never met, but I am a friend of your aunt, Kate. I will be continuing to pray to God and the universe that you receive the lungs you so desperately need and grow stronger and recover and live a long beautiful life with your loving family. All my prayers are out for you. – Rob Morris

  11. Oh Mary Ann
    You and Caitlin are so strong!!
    I continue to pray for her and for you
    I will ask Jesus to hold her hand and take away any fear she has.
    My deepest hopes and prayers are with you two

  12. Dear Caitlin,

    My husband and I know your Mom and Dad. I have been following your Mom’s FB posts and decided to send you a quick note since you are on my mind every day. From what I have read and heard about you, you are clearly an amazingly strong willed woman. I know your Mom and Dad love you more than anything and I also know many people are praying for you, including Bob and I. I pray for and am visualizing a healthy set of lungs thriving in your body very soon. I pray for the person who will give you their lungs and by doing so it will give their family comfort in knowing some good came from it. I saw a story about a woman who lost her young son and donated his organs. A young girl received his heart and the mother eventually was able to meet her and listen to her son’s heart beat inside her. She shed tears of joy hearing it and it gave her comfort. I don’t know why I felt the need to share that with you, and I am sure you have heard similar stories but it touched my heart and I think about it often. We are praying for you sweet girl. Sending positive thoughts and love and my God surround you with his light and watch over you during this time of distress.

    Trina and Bob Macchi

  13. Stay strong, fight on, know that there are so many sending love and following Caitlin’s progress. xo

  14. Caitlyn – you are the strongest woman I know okay, your mom ranks right up there with you). I am sending my payers to you, mom and dad. “Everything comes and goes, pleasure moves on too early and trouble leaves to slow.” – JM. Stay strong, you will have the pleasure and I know you will be the most grateful person in the world – it’s finding its way to you. Love Lisa Robinson

  15. Dear Maryann and Nick,

    I read your blog with great thoughts of Caitlin. I hold her up in prayer as she awaits her new lungs. God Bless your family.

  16. You have been in my mind for the last several days. Caitlin is a strong woman.You are a strong family. Ferocious prayers for you all.

  17. we are thinking and praying for you Caitlin. i remember how strong you were when young.The Liner family

  18. I am another positive story for you. Two years ago, I also had a double lung transplant at UPMC. I also was on life support for 10 days and on ECMO. The doctors told my husband and daughters that I was not going to make the night. They only gave me a couple more hours to live. Than a miracle happened!!! Lungs came in that night and miraculously they were a perfect match. Out of 8 doctors on the transplant team, only one doctor said he would do the surgery. The other doctors said “no” that I wasn’t strong enough. I owe my life to God and Dr. D’Cuna. Here I am today, doing great, 2 years + later. Never give up. Always stay positive. MIRACLES do happen. And of course, Dr. D’Cuna was one of those miracles for me. I know what you are going thru and the desperation you are feeling. Just keep praying. God is good, and I am right here praying as well. I will be looking for updates. Hang in there.

  19. Raging positivity coming your way from every pore…every ounce of my being. You’re a rock star.
    Let’s leave illness in the past.
    Today and tomorrow and tomorrow’s tomorrow are all about a healthy you…❤

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