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Wednesday, May 1, 2013

ICU Day 3

Tricia is now in her third day in the ICU.  Here is a quick list of what we know.

She has remained on the BiPAP.  The hope was a little time on the BiPAP would allow her to be able to regain some strength and go back to the nasal cannula, but the few times they have tried, her CO2 levels and blood pressure have jumped back up.  With the BiPAP all of her vitals are at a safer level.

All tests have come back negative so far.  It's good that she may not have an infection, but not good that we don't yet know what has caused this sudden decline.  We are still waiting on a few more tests to come back.  The assumption is her rejection has caught up with her and killing her lungs.

She remains on the transplant list, and I've been told she is basically at the top.  This is common at Duke, when a tx patient becomes very sick and admitted to the hospital, to bump them to the top of the list to try and receive new lungs ASAP.  We could receive a call at any time.

And she needs new lungs right now.  Although she is complaining that her breathing is becoming more difficult, she appears to be stable.  But if she declines at all, she will most likely be intubated and placed on a ventilator.  The chances of coming off the ventilator are slim, and although I haven't talked with the team yet, by guess is they would not be willing to transplant her while she was on the vent.  They have an intubation procedure scheduled for 10am tomorrow if it's needed.

Overall, Tricia is unrecognizable compared to a week ago.  It's crazy now to think she was walking laps and pumping weights on Friday.  She has been sleeping almost constantly since arriving and has only gotten out of bed a few times for a minute or two at a time.  Although she is aware of where she is and what's going on, you wouldn't know it by talking with her.  She has the BiPAP mask on, so she can't say much, and her mouth is so dry and tongue swollen that it's difficult to understand her anyway.  As long as she is sleeping, she is relaxed, but any time that she is awake, she is extremely uncomfortable and anxious.

All of that to say, the chances that Tricia will make it out of the hospital without new lungs are incredibly small.  Short of another miracle, either she gets new lungs now, or her struggle will be over soon.  We are praying for an immediate call for new lungs and praying that she will stay off the vent for as long as possible so we can continue to pray and wait.

Thank you.

Nate

105 comments:

  1. Prayers. And love.
    From my whole family--- prayers and love.

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  2. Holding you both in my heart ~~~

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  3. I will be praying. I am so sorry to hear this news. I know that God has a perfect plan for her. I want her to get new lungs tonight.

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  4. Praying for Tricia and for all of you. If it is okay, I will post this to my church's email prayer chain.

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  5. Still praying as are all the ladies in my Bible study group and my Canasta club in Baton Rouge.

    Linda Crane

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  6. I don't know you in "real life", but I have been reading your blog for several years. My heart just aches for your whole family. Praying hourly for you, for new lungs, and for peace.

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  7. Praying praying,wrapping you guys in my prayers and love.
    Jess law

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  8. PRAYING!!!!! My heart is heavy for you guys. I have been following since the beginning.

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  9. I am praying for Tricia and your family. Praying for new lungs now!

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  10. Praying and thinking of all of you & all those involved. Hoping to wake up to good news for your family.

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  11. Prayers for Tricia and her family at this very stressful time.

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  12. Praying with my whole heart for new lungs for her.

    May God strengthen you and Tricia and your family with His sweet grace.

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  13. You don't know me but I have followed your blog and story since before Gwyneth was born. I feel like I know you personally. I'm praying God's will over your lives and family. Praying for complete healing...

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  14. Thank you for the update Nathan! Will be praying with you during the night! Give Tricia our love and let her know we are praying!

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  16. Sending love and prayers. <3

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  17. My heart is breaking for all of you!! I have followed you from the beginning. I can't imagine the range of emotions you and the whole family are feeling right now. I will be praying for all of you!!!

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  18. So impressed with your rock steady faith and love for your famiily. It's a wonder to behold. We are asking the Lord to be glorified in all your lives, come what may. I am hoping for a miracle, praying for a miracle. By his hands-

    Kindly-

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  19. Thank you for the update. My heart hurts for Tricia and everyone who knows and loves her. My prayers are with you.

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  20. Elizabeth CisnerosMay 1, 2013 at 10:31 PM

    Praying that Tricia, you, Gwyneth, your foster child, and your families feel your Father's loving arms around you and His protection for you. Praying for Him to give your hearts peace. Praying for His glory through Tricia's healing.

    (I have no idea how the stupid garden hose link got pasted in my previous post above and now can't delete it! Sorry!)

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  21. We are lifting you all up in prayer. We have Faith that new lungs are coming for Tricia.

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  22. To live is Christ and to die is gain... praying for perfect timing that only God can make happen. Much love to all of you.

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  23. Our God is a God of miracles. In Jesus name I speak the healing power of the cross over Tricia. I pray for God's will to be done. I pray peace over Tricia and her family. Thank you Father for your unfailing love and your promises. You are our provider and our comforter. You have shown yourself strong in the lives of Nathan and Tricia and I ask for your continuing provision this evening.

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  24. Hoping and hoping things work out. I don't think you and I have one viewpoint in common, but still I have found your updates compelling for some years, and I admire and respect your faith and stoicism. Thinking of you all, hoping for new lungs for Tricia.

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  25. Praying with tears, much love from our family to yours.

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  26. Praying without ceasing "to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be the glory".

    "Why would you ever complain, O Jacob,
    or, whine, Israel, saying,
    "God has lost track of me.
    He doesn't care what happens to me"?
    Don't you know anything? Haven't you been listening?

    God doesn't come and go. God lasts.
    He's Creator of all you can see or imagine.
    He doesn't get tired out, doesn't pause to catch his breath.

    And he knows everything, inside and out.
    He energizes those who get tired,
    gives fresh strength to dropouts.
    For even young people tire and drop out,
    young folk in their prime stumble and fall.

    But those who wait upon God get fresh strength.
    They spread their wings and soar like eagles,
    They run and don't get tired,
    they walk and don't lag behind."

    Praying with you for another miracle!

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  27. continued prayers for her...and you.

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  28. to say i am sad and very worried is not even close to my feelings. i have been reading & praying for your family for years and feel like i know you, even tho we have never met.
    praying and asking God to answer all of our prayers for a miracle to happen TONIGHT.

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  29. Praying! Over and over and over again!!

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  30. Praying, praying, praying, praying, praying!!!! Sending love to you all.

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  31. I am sorry Nate. You and your sweet family are in my thoughts.

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  32. Certainly hoping for a good outcome for you both, or at the very least, for peace for both of you no matter what.

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  33. Continuously praying for Tricia, you, and your family. Asking Him for abundantly more than we can see possible. He can because He IS!

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  34. Praying for new lungs for Tricia, So sorry for all of you that you are going through all of this and hoping the call comes tonight.
    Susan
    Redwood City, CA

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  35. Continuing to pray for all of you.

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  36. Please tell Tricia we love her and is such an inspiration I will Conti nue to carry your family and Tricia in my heart and In Prayers. through him all things are possible i want so much for more

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  37. I have been praying and checking constantly today. I know it's in God's hands, but I hope that His next chapter for her starts with new lungs tonight.

    Gosh, I can't help but wish she had been reactivated sooner. :( I hope that's OK to say. I know it's a complex medical decision made by very competent doctors, so I fully trust that everything is part of the plan.

    Holding you up in prayers.

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  38. Jeremiah 33:3...call unto me and I will answer thee and show thee great and mighty things. Calling upon our Jesus for this mighty thing. He created the entire earth. He parted the Red Sea ...this is nothin for Him.

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  39. And, Nate, I wanted to add that I have told EVERYONE I know to please be an organ donor. The need is always there.

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  40. Tricia and you and Gwyneth have been in my prayers for years. I sent Gwyneth her purple tutu when she was still in the nicu. Already several years ago! I've been an advocate for organ donation for years and am proud to say I've convinced a few people how valuable a gift it is. Tricia has been an inspiration to me to continue to advocate and educate regarding organ donation. As a nurse, I've seen first hand how miraculous the results can be. I've never had a patients family come back and say they regret donating their loved ones organs. Quite the opposite.
    Your family continues to be in prayers.

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  41. Nate, prayers for you, Tricia, and family. We need a miracle.

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  42. Praying for you all. I've been following your story since before Gwyneth was born and feel like I know you all as family. My heart aches for all that you and your family have had to go through. Asking God to hold you very close as you walk through this trial and to surround you with constant reminders of His presence.

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  43. Nate I am praying tonite here in sunny San Diego. I am reminded of when you wrote _I knew that marrying Tricia would mean being a caregiver as well as a husband praise God for how faithfully you. Have kept your promise praying tonite

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  44. Praying that you get the call overnight & hear those magical 3 words of its a go.

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  45. I pray that Tricia remains stable and doesn't have to go on the vent to that she will be able to get her new lungs!

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  46. Praying the prayer that never fails~
    'Your will be done, Father'.

    Nana Judy

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  47. I know it sounds boring already, due to how many times I've posted that I'm thinking and sending positive thoughts for Tricia, but I figure there absolutely NO harm in doing so. :) Either it won't do anything, or it will help. So I choose to believe it will help! <3 Hopefully when I log online tomorrow, I will see good news that Tricia is getting new lungs. As you may remember (or if not, that's OK), one of my longtime dear friends has a teenage son w/ CF, so I've come to know all about it thru her. I've also made some adult friends w/ CF thru her. One is no longer with us, but one is doing fantastically with new lungs. Sorry to be rambling. I am scared like the rest of you, but I'm also trying to be optimistic! *hugs*

    Cheers from Redwood City, Calif.,
    Shari K.W.

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  48. Wasn't Tricia on a ventilator when they did the last lung transplant? I thought I recalled her having the trach and vent attached.
    We are praying for new lungs for her, and for peace and calmness to take place of her anxiety. I hope she can spend some time with Gwyneth and her parents as I am sure that would bring her tremendous comfort.

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  49. Never give up hope. Remember how sick Tricia was before she received her first set of lungs and yet she pulled through! She will beat this too. The blessing in all of this is having her moved to the very top of the list. I can't wait to read your next post with the good news that Tricia got new lungs. Praying without ceasing. Please keep us posted and help guide our prayers.

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  50. "Wasn't Tricia on a ventilator when they did the last lung transplant? I thought I recalled her having the trach and vent attached."

    She was, but we've been told repeatedly by the transplant team that her circumstances the first time were very special, and that a second transplant is much more difficult.

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    Replies
    1. Nate
      Won't they put her on a vent anyway during the transplant surgery? Seems like it shouldn't prevent the docs from performing the operation. I hope all goes well for Tricia. Praying.

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  51. Just waking up here in Turkey to this news and praying hard for Tricia, your family, and the donor family.

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  52. Nate, we are praying so hard for Tricia and for all of you. Can you explain why the docs would be okay transplanting now in her weakened condition yet they removed her from the list before because she was too weak? Doesnt make sense!

    I hope that you are not alone there, and that Tricia and your family are there with you giving you much needed support. Is Gwyneth there now? Hang tough. You have so many prayer warriors and you are doing a great job taking care of Tricia. Make sure you get rest too.

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  53. Is the intubation procedure you mentioned for the morning the incision into her neck or something different?

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  54. nathan you are one of the strongest, faithful, loving, husband, father and caregiver i have ever seen, tricia is gonna get through this, she is such a fighter,through christ jesus all things are possible...i am so praying for ya'll...thanks for the updates...cheryl godfrey





























































































































































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  55. Praying..praying..praying for... Tricia's new lungs, for Gwyneth's tender heart, and for the donor family's strength during such a difficult time. Bless all of you on this journey. xo

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  56. You are all held in our prayers. Only this morning we were reading from John 14 and our kids were so excited by verses 13-14 "I will do whatever you ask in my name so that the father may be glorified in the son. If in my name you ask me for anything i will do it". We will be praying to Jesus for you all today.

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  57. Praying and trusting in the One who is able to do exceedingly and abundantly above what we ask or think!

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  58. Lifting you all up in prayer!!!

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  59. Praying for you both!

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  60. Praying for your family. He is the great healer.

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  61. Your lovely wife is in my heart and prayers today. Praying for peace for you and comfort for her.

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  62. I wanted to start by thanking you for taking the time to post and share what has been going on. I know it is a battle for you to vulnerably write your heart, worriess and hopes. I want to affirm your spirit by saying the Lord is honored and loves you so much. When we declare Hope and Faith it destroys the enemy's plan. To say you have been in a spiritual battle is an understatement, this has been a war for you all. At times, wars are present, but they don't affect much, in fact some may not even believe they are going on, and at other times, they consume all, affect all, and tear our hearts into a million pieces. I say this to say, keep your minds and thoughts focused. That doesn't mean you wont be afriad, angry or sad. But it means you chose what you are going to believe no matter what happens. I truly believe with all my heart that the Lord is laying in that bed with Tricia, stroking her hair and telling her how much He Loves her. He will never leave her or forsake her. He doesn't want to see her suffer, but no matter what He has a plan and His will is more loving than anything we could ever imagine. I am praying for you and your family and asking for strength, peace, and some good moments of joy and maybe even laughter. I am praying for her miracle and there would be a second chance with new lungs. God is always always ALWAYS honored when we chose to have Hope in Him against any circumstance. He will never put that to shame. Many prayers and blessings.

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  63. Thoughts and prayers to you and your family.

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  64. Prayers for Tricia, and for the family, especially your sweet baby girl.

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  65. Prayers for Tricia, and for the family, especially your sweet baby girl.

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  66. Reading your update makes my heart hurt. With tears in my eyes, I am praying for you all and praying that whatever God chooses to allow, you will have peace through the storm.

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  67. I just read your update from yesterday...
    Still praying and believing for a miracle!!!

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  68. We are praying here.
    Thank you for the updates. I know it must be hard. So many of us pray for your family & we love you all. Praying for a miracle & for peace & comfort.

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  69. Praying every few minutes this morning, and will continue to do so!

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  70. Praying for all of you and the donor family. God will provide in his perfect time - I have truly learned that from you and Tricia over the years from your blogs. I am the impatient one, wanting him to provide now.

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  71. Praying for your family today. Praying for peace for you while you wait. Praying for the family of a donor too.

    A friend in Canada.

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  72. Praying for God to continue to shine through Tricia and you, Nate. No matter what. He loves you both so much. As do we...

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  73. Praying for the miracle of new lungs for Tricia. Praying for you and your family. Praying, praying, praying.

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  74. praying with you for new lungs soon!

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  75. Sent your way by the sweet Atkinson family - praying for new lungs for your wife, strength for you, and miracles from our God!

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  76. I am praying hard for Tricia right now.

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  77. May the Lord bless you and keep you. May He make his face shine down upon you (all) and give you peace.

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  78. Dear Sir,

    I come to you from Becky Smith's blog site. And my favorite verse in God's Word is JOHN 14:14,15which basically says,'wHATEVER YOU ASK IN MY SON'S NAME, I will do it for you...He does not say he wants to do it but... He says HE WILL DO IT...SO Lord, I ASK YOU NOW AND IN YOUR SON'S WONDERFUL NAME JESUS, WILL YOU PLEASE HEAL THIS WIFE AND MOTHER'S LUNGS. DO IT IN A WAY EVERYONE WILL KNOW YOU ARE ALIVE AND STILL IN THE HEALING BUSINESS TODAY
    . lORD I LOVE YOU AND I THANK YOU FOR MY HEALING;IN JESUS SWEET and wonderful name I ASK...Amen and amen! Fran from Texas

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  79. Praying for you and your wife! -Amy (LUO)

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  80. Praying!

    Melanie
    Mount Joy, Pennsylvania

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  81. Praying hard. Peace. Hope. Love. Thank you, Nathan, for taking time to update during this frightfully difficult time.

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  82. Sending good thoughts Tricia's way.

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  83. We are all praying for new lungs for Tricia quickly, in Elizabeth City.

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  84. continued prayers in St. Louis for you, Tricia....

    mrs. pam

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  85. Prayers and strength to all who are waiting. May you feel God's presence and love through all who are reading your story and sending out warm thoughts.

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  86. Praying for God's will to be done. I cannot imagine what you and your family are feeling at this uncertain time. Most of all I pray for Tricia to be comfortable, pain free, and have peace in her heart.

    God bless you Nate as you navigate this path, may God give your heart peace as well.

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  87. I pray that Tricia doesn't suffer, and that she receives a complete healing, whether it is here on Earth or in Heaven's arms. Only God knows what is best for Tricia. We continue to lift you and Tricia up in prayer. My heart just aches for little Gwyneth. She must be so confused and scared. I pray that she will be okay through all this.

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  88. We are praying for your sweet wife, as well as for the potential donor's family.

    Praying for Trish's peace,comfort, and healing, and for the donor's familys to experience strength and comfort, and much peace and strength to you, Gwyn, and Trish's parents.
    We appreciate your updates so much. Please help us know what to specifically pray for.

    Did the intubation procedure go well this morning? I made to pray at 10am on the dot.

    Jane

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  89. prayers sent up just now and will continue to pray

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  90. Praying hard for the best outcome for Tricia!!! May God hold you all in His peace and love!

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  91. Hope the intubation went well this morning and that Tricia is comfortable. Praying for God's will. Also, praying for the donor's family.

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  92. Hi Nate, I'm an RN, and happen to work on a transplant floor. We often translant patients who are on ventilators. Hopefully, you just misunderstood the docs,and that being on a vent will not stand in the way of Tricia receiving her new lungs.

    All my prayers to Tricia and your lovely family. Praying for the best outcome possible.

    Lisa from New York City

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  93. Praying for Tricia

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  94. Praying for all of you!

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  95. Praying for that miracle that Tricia needs . . .

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