Last night we received what could have been miraculous news. A good friend’s dear young cousin died suddenly. The family wanted to donate the organs. The cousin was the same size (5’3″)  and blood type (O+) as Caitlin. They did what’s called a direct donation, specifying that they wanted the lungs to go to Caitlin O’Hara at UPMC.

Everything went into motion.

Transplantation involves a lengthy set of procedures that take time. The donor lungs have to be assessed several times, at the donor site, for the initial “looks good, let’s continue” sign. When the UPMC team gets the okay, two UPMC fellows fly to the donor location to do the rest of the tests.

Unlike the previous “dry run,” these lungs looked initially promising. We were fiercely hopeful.

At 7:45 am, as all pre-op activity was happening, Caitlin’s surgeon came in with the news that the donor lungs could not be used, in anyone. The donor had been a longtime heavy smoker, and even though many successful donors have been smokers, these particular lungs had some damage, as well as some pneumonias, that meant they could not be used.

We were devastated. Everything seemed to be pointing to this as positive for Caitlin’s life, and positive for the donor family, to give them some comfort.

There had been a snag, though, in the middle of the night.  As I mentioned yesterday, when Caitlin was switched to the arterial ECMO, they had difficulty placing the new cannula in her left leg. They were keeping a close eye on it.

In the middle of the night, it was clearly bleeding too much. She had to go into the OR and have them switch the cannula to her left leg. She lost a lot of blood. It took hours to deal with this.

At this point, they would have gone ahead with the surgery but it would have been much riskier, and much bloodier, with her blood so thin.

Now it is absolutely essential that she get back to a stable place, so she can receive another offer. She’s being given a lot of blood products to get her blood healthy and coagulating again.

That’s what we must pray for. Continued stability. And another offer, soon.

Direct donations are a wonderful thing in a terrible time. We will be forever grateful to our good friend, for thinking about Caitlin in the midst of grief for his beloved cousin. As desperate as it sounds—-and it’s hard for us to put it into words—please keep Caitlin or another needy person in mind if you or someone you know is forced to make a difficult decision about a loved one.   When Nick’s beloved brother Willie died at age 29, his organs saved 7 people.

I wish everyone could stand by Caitlin’s bedside right now and see how truly important it is to increase organ donor awareness. Just one week ago, I brought Henry into her room. We helped her take a shower. She was smiling and happy. Now she is in and out of consciousness, full of garden-hose sized cannulas, IV lines, monitors. She didn’t deserve this. She worked so hard, for over 2 1/2 years, to eat well, and exercise to her ability, to do everything possible to keep herself as healthy as possible for transplant.

Organ donor awareness is essential.

Our hearts are breaking but we continue to hope.

–Maryanne, with Nick

Author: kittenupdates

I am the author of CASCADE and LITTLE MATCHES: A Memoir of Grief and Light

27 thoughts on “DECEMBER 8–Trials”

  1. Yes, we are praying for a return to stability for Caitlin, and an offer of healthy new lungs….ASAP! love from us both, Anne and Walter

  2. I was so hoping this was a match and could work 😨 and organ donation should be on everyone’s radar. I couldn’t agree more!

    Stay strong Caitlin! We are all praying. 💜💜

  3. We are all at your side in spirit, praying, staying hopeful, being positive and surrounding you with love. Caitlin certainly doesn’t deserve to be where she is and going through all of this. She deserves to be able to get on with her life. I know your hearts must be breaking, Maryanne & Nick but stay strong, stay well and know that new lungs will be found and this time they will be right. We also pray for the brave, selfless family that offered you hope and a potential miracle, what wonderful people. Eileen & Padraig xxxx

  4. This is heartbreaking news. Please know I am praying for Caitlin and hoping a transplant will be available soon. Sending positive thoughts and huge hugs.

  5. I am at a loss for words…I will continue to PRAY as hard as I can for a Christmas miracle for Caitlin…you said it perfectly – she did not deserve this, nor did you and your husband. Sending love and hugs to all of you. xo

  6. My heart breaks for you guys. We all think of Caitlin often and keep her and both of you in our prayers. Try to stay strong; although you must be exhausted from doing so for so long. XXOO Cindy Macgowan

  7. How frustrating that must have been, and how sad for the donor’s family. Continued prayers and positive energy being sent from Canada. I vow to help promote organ donor awareness for Caitlin and all of the others out there needing help. Thank you for the updates. We all love you so much, Caitlin! Keep up the strength that we all know you have inside you! Constantly praying that your perfect fit will come very soon!!! xoxoxo

  8. All of your strength is beyond measure and understanding. As I fly across this great country today I am praying for and feeling that a donation that can work will emerge. With all our hearts. Ken S.

  9. Oh, dear family. Dear, dear Caitlin. I hold my breath as I open each update from you, hoping and praying with all my mite for fiercely positive, hopeful news. I pray to Lucy daily to please, please help deliver a healthy, perfect set of lungs, and guide Caitlin through this terrifying process. Though we have never met in person, Caitlin and I grew close through the battle to save Prouty Garden. We felt so deeply connected right away through Lu, and the suffering experienced by both girls. I am such a huge fan of your Caitlin. She is a fierce, ferocious and mighty One. My love, heart and prayers are with you all. Please, if there’s a chance to- will you tell her how much we all love, adore, and need her. And how proud we are to be in her circle of light. Xoxox Beecher

  10. The Wedens continue to pray for you Caitlin and that you will receive lungs from a generous donor. We remain optimistic, stay strong!

  11. Hang in there Caitlin, you deserve a break and it will come. I’m embarrassed to admit I never registered as donor, but just went online this morning and completed my registration.

  12. What a devastating blow for everyone, just heartbreaking. But still I am hopeful and clinging to #FerociousPositivityforCaitlin. It has become a mantra.

    Her last text to me after the last dry run was, “I have the faith.” So do I, girl. But this is so, so hard. ❤ Stay strong mama and papa bear.

  13. Praying for Gods grace and mercy, for a perfect set of lungs for Caitlin and for strength and hope as you wait🙏

  14. We are praying so hard that healthy lungs are on the way. Caitlin is so determined. Stay hopeful and keep fighting.

  15. I’ve been thinking about you all constantly – woke up several times last night and said a prayer. Prayed all day until I saw the update.
    Said a few curse words, told my minister who had been praying for you all along with our entire church – his reaction – “shit”.

    None of this makes any sense to me – you are good and loving people, Caitlin a beautiful, stubborn, stoic, kind soul. None of you deserve this.

    I will remain ferociously positive for Caitlin. I will keep praying. And I will keep reminding people to become organ donors.

    Love and light xo

  16. I am an organ donor and pray for her regularly. I can’t imagine the pain or the joys you have experienced. I’m happy and sad. She is always in my thoughts.

  17. Dear Maryann and Nick
    My heart goes to both of you, it is heart wrenching for you both to watch your sweet daughter go thru this horrible time. Please keep hope faith and know that a lot of us are praying for Caitlin.
    She will pull thru this and will be home where she belongs.

  18. Holding Caitlin in my heart and sending so much love. I wish we could all do so much more. Your daughter is my hero. All day I’ve been thinking about the letter she wrote for the Prouty hearing that was read by her Uncle Mike. Her speech was the most powerful one, even in someone else’s voice. Praying for rest, strength, stability and new lungs for Caitlin tonight.

  19. Dear Maryann and Nick. My heart goes out to you and Caitlin, praying and hoping for you that all works out well. I think of you often and can only imagine what you are going through.
    Hoping with all my heart and soul for new lungs for Caitlin and a joyous holiday season. I pray for your strength, your courage and most of all for Caitlin, during these very difficult times..

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