Tuesday, August 6, 2013

0 to 60

The past week or so, Quinn hasn't entirely been herself. We've used her narcotic an unprecedented three days in a row, she's been more open to affection, and generally a little more blah than normal. But nothing specific seemed to be ailing her. 

Overnight last night, however, it all came to a head with a spiked fever of 102.6 at 4am. Crazy as it sounds, her ashen color and want of me to sleep in her bed - whereas she would normally literally biff me in the face and kick at my belly to get me out - were actually more concerning to me than the fever itself.

This morning, 7 min after the Tylenol was technically no longer effective, Quinn had a 103.7. She is extremely lethargic and, when the narcotic is not in her system, is whimpering in her sleep. 

The nurse came by this afternoon and even the self-dubbed Eternal Optimist agreed that while it may be an infection, signs are indicative otherwise. That instead, Quinn may be in the final stages of disease progression. 

She was started on antibiotics at 11:30 this morning, so we'll have a much clearer picture over the next 24 hours. 

I'm not sure what to even hope for at this point. The end is imminent, even if it's not within a days or hours timeframe. And she's pretty zen right now, even feeling really shitty as she obviously does. So is it the worst timing?  Because the end result is not changing, timing is really the sole variable. 

I've given her 'permission', if you will. Six months ago today she was in PICU after bleeding out and I was begging her to hold on. But I'm not begging her right now. I'm telling her instead that if this is it, if this is the right time for her, then it's ok for her to let go. 

It'll never be OK. But for Quinn, we'll figure out a way to make it so. 

Please keep my baby girl in your thoughts. 


55 comments:

  1. Eileen,
    I first heard about your family on People and starting following your blog. Although you don't know me, I feel obligated to tell you that I think what you are doing is amazing. It seems that words are never enough at times like this, but please know that I think about Quinn often and I feel like my life has been a little brighter just hearing about her stories and accomplishments. She is teaching the world perseverance and courage one to-do list item at a time and that is a pretty incredible contribution for such a little girl. She truly is a gift and I can only imagine how proud you are to be her mother. I will continue to keep all of you in my thoughts and prayers. Thank you for sharing your story.

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  2. Holding your beautiful girl in my heart and sending loving thoughts your way. My there be peace in the days ahead. I am in awe of your strength.

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  3. Our thoughts, prayers and love are enveloping all of you.
    Loving our little baby princess Quinn.
    The Kaner Clan

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  4. Thoughts and prayers are with you. I'm a friend of the Ingrams and have been following your blog. Big hugs and aloha.

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  5. She is always in our hearts, thoughts and prayers.

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  6. My thoughts and prayers are with you, my brother, nephews and the entire family.....xxoo

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  7. My thoughts on prayers are with you. I am in awe of your desire to give Quinn the richest life possible. Peace be with you all.

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  8. Praying for all of you. I have been thinking about you and your family daily if not more often. You are an amazing mom and you have an amazing family. My heart, thoughts and prayers are with you all.

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  9. Thoughts and prayers are being lifted for your family. Quin has wonderful parents who are doing all they can to keep their focus on her. Soak up every second you get. May each one hold something new for your family.

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  10. Lots of love to all of you. You are an amazing family.

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  11. This just sucks so very much...I'm incredibly sorry.

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  12. Thinking of and praying for Quinn and your family. I started following your blog from seeing your story on People. You are an amazing family and I have two beautiful bracelets for Quinn from Trek's website that I plan to give to my daughters when they are old enough and sharing with them who the bracelets represent. A beautiful, courageous, little angel who made a difference to so many, even those she never met.

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  13. Oh Eileen, this is a heartbreaking post. Keeping you in our thoughts and prayers, as always. Hugs to your little girl. Xoxo

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  14. Eileen, I don't know what to say exactly. So many people read your blog and have fallen in love with your family. I feel that i know all of you through your words and pictures. Quinn is in my thoughts and prayers daily. I pray to God to give you strength, even as Quinn loses hers. Her life has meaning and purpose and has taught all of us so much. Every moment continues to be precious. It had to be so hard to make the post today. Thank you for the update and sharing news with us. I hope you will let us know how Quinn is doing tomorrow.

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  15. May you feel the love and strength of the NP community. Saying prayers for your family and beautiful Quinn.

    Nanci Glassman

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  16. So hard it must be for you to write this. So uplifting too for you to share again in the joy of having Quinn.
    My thoughts embrace you, me a stranger to you, but one who thinks of you and is humbled by your strength and honored by your openness in sharing.
    You are a source of inspiration for so many. Quinn has given so many so much, but most of all she has given you strength.
    My thoughts are with you.

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  17. My thoughts and prayers are with your sweet family. As I read the comments of Ms. Maas above me I thought yes that is exactly how I feel. Know your family is being lifted up as you struggle with the letting go of the incredible gift god has given you.

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    1. Thanks, Andrea. Rereading yesterday's comments - we are Quinn's community and pull strength from each other. Hopefully, we give some of that back to Quinn, her mom, and all the Linzers.

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  18. Keeping all of you in our hearts, thoughts and prayers.

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  19. Thank you so much for sharing this news, Eileen. I know it must be difficult to do so. Please know that there is an army of people out here sending loving and comforting thoughts to all of you. Keeping you in my heart and sending wishes for peace and comfort - xoxoxo

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  20. You and your family are so blessed with such an amazing little girl. She has deeply touched my heart as well as so many others. It's hard to imagine what you and your family are feeling right now, but you have been incredibly strong through it all. Quinn is very lucky to have you as her mommy. It is very evident how much she is loved! Hugs, thoughts and prayers are being sent from my family to yours.

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  21. I think of your family often but today I am holding you all especially close to my heart.

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  22. You ARE in my thoughts and prayers. You keep loving that little girl with all your might.

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  23. We are all thinking about the Linzer's and wishing you all much love...

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  24. I have followed the Ingram's for a long time now and now your family. I am praying for you all.

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  25. Sending our love and prayers to your entire family Eileen. We are so sorry, so very sorry. Xoxo s

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  26. I have been following all of the NPA children since my friend Deanna's daughter was diagnosed and ultimately passed away last year. Having children this age myself, it takes my breath away to even think about. Here you are being brave because you have no choice, being courageous and uplifting for Quinn and being an amazing mom on top of all that. Quinn is beautiful and while I will never understand God's plan to take these beautiful children home so very early, I don't ask why but instead how can he help me cope with the loss of these angels. I'm so very sorry.

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  27. Keeping Quinn in my prayers Eileen, sending peace to her and your family. Quinn is surrounded by the greatest gift you could give, your love. ~Maureen Lynch

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  28. Hello Cousins,

    Emma and I both love you all so much and are thinking of you always.

    -Alex

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  29. Thinking sweet thoughts for you all. Quinn will be the prettiest angel in Heaven.

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  30. I love you all so much. I have so many feelings right now. I am just sitting here in my pjs just thinking of you on this rainy cold day in CO, sending you so much love, my heart is broken. xoxo ,Chelsea

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  31. prayers of comfort and strength for your family in this tough time.

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  32. Sending your whole family love and prayers...there are no words. No parent should ever have to feel what you are feeling. Your strength for your daughter is inspiring.

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  33. Sending your family love and prayers. May Quinn be comfortable and peaceful and feel the love from her family and the people whose lives she has affected around the world.

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  34. Sending your family lots of love and prayers! May the comfort and love of those around you get you through this tough time! I am praying and thinking of your family and sending love!

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  35. I can't even begin to imagine what it feels like to be in the position you're in. My heart just hurts for your family. Please take heart in one amazing thing... Quinn is touching more lives in this world than many of us would ever dream to touch. There has to be some purpose in that, I have to believe. I do believe Quinn knows how much she is loved. She is a precious soul.

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  36. Eileen...feel more than free to delete this but it brings me some comfort at times of sadness...although I have no idea the pain you are feeling, just know that so many people who have never met you or your beautiful family care so much about you. xo

    Prayer of St Francis

    Lord, make me an instrument of your peace.
    Where there is hatred, let me sow love;
    where there is injury, pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.

    O Divine Master, grant that I may not so much seek
    to be consoled as to console;
    to be understood as to understand;
    to be loved as to love.
    For it is in giving that we receive;
    it is in pardoning that we are pardoned;
    and it is in dying that we are born to eternal life.

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  37. I am so sorry. I will continue to keep your family in my prayers. Lots of love.

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  38. I am so sorry. I couldn't imagine what your family and your precious baby are going through. I pray that she will be pain free. Sending prayers for peace to your family.

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  39. Dear Linzer family

    I found you through Trek and his family and have prayed for you off and on. We lost a little boy, Royce almost 36 years ago...my heart aches for you. Love and prayers during this most difficult time.

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  40. My heart is breaking for your family. You have such a beautiful little girl, full of so much love and life, and I've so enjoyed following your family through all of your adventures. I pray for God to give you peace and understanding during this, probably the most difficult moment in your life. I can't begin to imagine what you're going through. Lots of love and prayers coming your way from Oklahoma!!

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  41. I am so sorry Linzer family. Praying for you and specifically for Miss Quinn. She is a such a sweet and beautiful little girl.

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  42. Our hearts hurt for you all but send so much love as you face this. You are a beautiful and strong family, it is obvious from your writing. How unfair that this is even a thing people deal with in life. Wishing you all much peace and comfort in the wonderful life you've given your beautiful girl.

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  43. I have been following your blog since I read the story in People. It is obvious that you have been doing a great job with Quinn and that she has been so happy despite the circumstances - you can see it on her face and in her eyes. Know that your family is being kept in thoughts and prayers.

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  44. Sending hugs and prayers for your entire family. May you continue to find strength to endure such a heartbreaking journey.

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  45. My heart is heavy and it is so heartbroken for you! You and your family are in my thoughts and prayers!!!

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  46. I'm heart heavy for you all. My prayers and thoughts have been with you since I read this on Chelsea's blog. You have made sure Quinn is not alone and neither will you be - you have many, many praying for and thinking of you, Linzers!
    Shelley in Canada

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  47. Sending prayers to your family. Thinking of you often. Quinn knows she is loved by very special people. You can see it in the pictures.

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  48. I am a loyal reader of Chelsea's blog and wanted to tell you, Eileen, that your little sweetheart is in my thoughts and prayers. I am praying for you all to have the strength --and support from all who love Quinn and your family.
    With my prayers,
    Chelsea's Ohio friend, Connie

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  49. There are no words to adequately convey our feelings. I hope that all of the positive thoughts and energy sent to Quinn and the Linzer family as evidenced by all the comments here bring you some measure of strength and peace as you all navigate these difficult days. I am sorry that you are all going through this. I wish that Quinn's life will bring you some solace. Peace.

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  50. Praying for you and your sweet baby Quinn. She is beautiful.

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  51. As a mother of two children and a neighbor my heart goes out to you & your beautiful family! My family & I are praying for Quinn and your family! I hope the love & support of all of us bring you some comfort during this extremely difficult time.

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  52. I am so very sorry that you are here sharing this, but I am so very grateful to have been touched by such a beautiful sweet little girl.
    My thoughts are sent out to you xxx May Quinn be in no pain, will be thinking of you all xx

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  53. Like I said, the most beautiful angel. My heart goes out to you.

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