Tuesday, February 5, 2013

Spoke Too Soon

I am cringing right now as I think back to my Pollyanna-esque post from Saturday - all sunshine and rainbows post-surgery.  

Unfortunately that world came literally crashing down on us at 1am Monday morning.

Quinn began bleeding out through her tube so we brought her back to the place I swore to her she'd never see again - the hospital.  After a few examinations by medical staff, and a few refusals of blood draws by us, Quinn was admitted.  

We were brought to a floor we had never been to before - the Hem Onc floor, where the very sweet nurse 'reassured' us by saying "don't get freaked out by the Oncology title of the floor - this is just a matter of bed placement.  Parents always get freaked out."

Dear girl, I would give my left arm for this to be a Hem Onc case.

The blood continued to come out of the tube most of the morning.  Quinn wasn't looking great and they decided she may be better suited in PICU for observation.  As a precautionary measure, they also called in for 2 units of blood in case the need for a transfusion arose.

Not 10 minutes later, Quinn crashed.  She lost about 200cc of blood in less than an hour, with no sign of stopping.  She turned a color I don't ever want to see again, but knowing I will, hope to see it only one more time.  Brett's hands were shaking as he stroked her hair and I had to keep from screaming at the top of my lungs by instead talking to her, begging her to stay with us.  

"She still has a lot of life left in her." 

"This is too early."

This is just NOT fair

These were the sentiments, spoken and inferred, throughout the room as she crashed.  In the minds and mouths of the 15+ medical staff at her bedside.  In the hearts of all of us as we literally ran her - mid-transfusion - to the PICU.  For 20 solid minutes, we believed that we had become the most unlucky of the unluckiest - we may actually lose our NPA baby at 8 months of life.

Then Quinn reminded us just who we were dealing with.  Somehow, someway, she mustered the strength and fortitude needed to push through and hold on.  I'm writing this some 30 hours later, watching her in her hospital crib instead of from the funeral home.

Two units of blood, one of platelets, countless doses of Tylenol, morphine and antibiotics later, Quinn is still in intensive care but her coloring is back - and so is her agitation with us for still not feeding her.  I never thought I'd be so glad as to see her so angry.

This episode has delivered the future to our doorstep.  Quinn's incredibly kind, incredibly brilliant, incredibly intuitive surgeon spent 40 minutes with me earlier today discussing Palliative Care.  And without my even saying it, he knew he needed to reassure me that I had not, in fact, crossed the line of compassion and comfort I promised to Quinn by going ahead with these measures.  That they were for her comfort, and to preserve her quality of life.  Because she still has a quality of life to preserve.  

I was later visited by the PICU Palliative Care physician, alongside the PICU chaplain.  Who knew people could be simultaneously so intelligent and empathetic.  Not that I thought the two were necessarily mutually exclusive, but to be both at such high levels seems, to me, to be very unique - yet we've been privy to it a few times just in the past two days alone.  I guess maybe those 1 in a millions all run in the same circle ;)

We now have to make some crucial decisions about how far we believe we're willing to go with each and every possible intervention, and the checklist needs to be with us always should something arise as quickly as it did yesterday morning.  

I had already made an appointment to meet the Pall-Care team at our local post-acute care children's hospital.  That appointment is in 2 weeks and it seemed pretty pro-active at the time that I made it (the pediatrician even teased that we'd be the first ever family to seek out palliative care for teething, which Quinn is currently dealing with haha).

Now it seems so so far away.  I live in fear that one of these situations will crop up again before then and that I will not be prepared, that I will make a regrettable decision and I will be unable to take it back.  Ever.  

I so want the option of crawling under a rock.  Ignoring the obvious.  Gaining access to a time machine and going back a month, two weeks, to Saturday.  But I can't.  

So instead, we keep on keepin' on.

11 comments:

  1. Sending love and hugs. These decisions are not easy, and are not meant to be. But only you know what is best for Quinn. So happy to hear that her spunk is back, and that spunk will get her through this difficult time. Many of your NP family have been in your same situation and do truly understand.

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  2. Oh Eileen, I sit here sobbing, I had to skip to the bottom of the post to make sure she was still here. My heart is breaking, I literally felt it drop when you wrote of her going downhill. I am so glad that you get more time with her. I am so sorry it was such a hard and painful weekend. We all understand you painfully impossible choices, Quinn is so lucky to have more time with such a beautiful family. I am sending you sooooo much love and I really don't have the words to say, I am just so sorry and sending Quinn my heart. We all love her so much and your family. love, Chelsea. And I am so thankful for your Pollyanna post, it just shows how you are literally living each day as if it was Quinn's last just as you promised her.

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  3. Eileen/Brett, We can't even tell how our heart is crying for you all, but most of all beautiful, sweet, delicious Quinn. Hold on to your strength, Quinn needs it. Y'all seem to have such an ability to not crumble. We hope Quinn continues to get stronger. We love you all so much and want you to know we are so sorry for all your pain.
    Love,
    Jane and Rich

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  4. Praying for your strength and Quinn's.

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  5. Praying for all of you!! For Peace, for Understanding, for patience, for love!

    Nancy Whipple
    (friend of Eve Driscoll)

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  6. Oh Eileen - my heart is breaking for all of you that you had to go through this weekend. I can't offer anything except my most fervent hope for peace and comfort for all of you and for knowledge that whatever decisions you make are the best ones. They can be nothing but that since each decision will be made from your deepest and never ending love for her. There are so, so many out here who love Quinn and your family as though you are our own. Please know that we are with you in our hearts.

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  7. Dear Eileen- you will never make a wrong decision because you do it from your mother's heart. my prayers and thoughts are with you. love, irina

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  8. I'm so sorry you all had such a rough weekend. Thank goodness Quinn pulled through. I hope times like these are very few and far between! God Bless!

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  9. I'm sorry Eileen and Brett - I have no words that I think could possibly offer even just a infinitely small dot of comfort - except to say all of you are in our prayers. I pray that your entire family can feel God's finger gently wipe away each tear that comes from your eyes.

    Tim

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  10. Eileen and Brett - I have just read your story in today's Newsday. My heart goes out to you for your bravery and your love throughout this time, caring for Quinn, your boys, and each other. Altho you have written a different NYC museum on Quinn's List, I can provide you with tickets to NYC's Museum of Natural History, where I work. These are Super Voucher tix, good for admission, and for the 'dinosaur' exhibit, all other exhibitions, IMax, Butterfly room, etc. And then, of course, you can walk across the street and do your "picnic in Central Park" from your list! :) Please contact me by my email, and let me know if you are interested. I can get you multiple tix - 4, 6, 8, 10, etc. I could mail them to your address, to the Newsday reporter's address if you prefer, or leave them for you on "Will-Call" at the Museum. Just let me know when you have the chance. in the meantime, my very best to you and your family.

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  11. Your strength is increible! I keep your family in my nightly prayers for your continued daily courage. If MOMA is still on Quinns list....let me know. Rosemommy

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