Thursday, February 7, 2013

Keep on Keepin' On

Just wanted to give a brief update on Quinn's condition.  Thank you to the thousands of you who have checked the blog, contacted us by comment, Facebook, email, text and phone call.  It'll take some time to get back to each one but we'll try.  In the meantime, please know that every one of the outreaches means so so much to us and truly helps us make it to the next step.

Quinn is still in PICU.  There was some rumor yesterday of her moving to a floor but those have sort of waned away and here we remain.  

Her vitals have basically stayed intact and the bleeding seems to have finally come to an end.  Quinn's current issues are surrounding tolerance of the feeding and fluid as well as comfort and low platelet counts.  

She's awake and unhappy for 7, 8, 9 hours at a time during the day despite morphine and tylenol.  Her albumin levels are low and her Niemann-Pick cells are gleefully soaking up the extra fluid - causing tremendous water retention and bloating.  Because of this, we've had to periodically cut her feeds (of Pedialyte - she's hasn't even gotten to formula yet) and her maintenance fluids through the IV, leaving her completely empty.  We're trying a diuretic now to see if we can't get some of that water released.

Many people have asked if we have determined the reason for the bleeding.  As Brett and I have refused an endoscopy, we will never be entirely sure but the surgeon believes that it is a rare (of course!) result of the g-tube placement.  The severity of the bleeding can probably be linked to her Niemann-Pick (low platelet counts are symptomatic of the disease).  So, the perfect storm of incidents.

So, that's where we are now.  I'll update again when there's a change.  

Have to leave you with this photo that Brett took yesterday so you can see that she looks ok - coloring and attitude ;)  The caption is Brett's as well - I can take no credit for this :)


chillin' with her posse

12 comments:

  1. Awwww what a wonderful picture. Love the precious little face. In our thoughts, every minute. May the rumor of her moving to a floor happen real quick.

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  2. Happy to hear she is doing better! I love the picture and caption!! I wil continue to pray for her and all of you. I truly admire your strength.

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  3. She is beautiful even when she doesn't feel well. She also looks like she is telling the world to piss off! Good for her - that spunk is gonna' serve her well! :) You must just want to climb in there with her and snuggle! All of you are in my thoughts and prayers, Eileen. Sending good thoughts and much love - xoxo

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  4. So glad to hear she is making improvements. We went through a similar scare with Dan's gtube, but in the end it was a med reaction. Hope her spunk is motivation to get her to a regular bed soon! Stay safe this weekend with the storm.

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  5. thank you for the photo of her-she is truly beautiful! her hair is just to die for, I want to touch it:) I am so sorry she is not feeling well, that made me so sad that even with the meds she is still in pain. I hope you get to go home soon, I know that is just what she needs. we think of you constantly-xoxo ,Chelsea

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  6. No need to answer this stranger...just know we are sending love and warm thoughts for Sweet Quinn. It sounds like her fighter spirit is showing itself and I hope she get to a another section of the hospital, then back home as soon as possible. Sending mama-love and hugs to you parents, you must be exhausted but doing a great job. Hope the fun adventures resume as soon as possible...

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  7. We continue to pray for your family every day.

    Nanci Glassman

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  8. praise the Lord. I am so grateful you have more precious time with your precious baby.

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  9. I just found out about your special little girl tonight. I read through your stories of ups and downs and I will never be able to hold a candle to your strength as a Mom and Dad. My heart and soul is with you on this so ever hard journey. My prayers will lay beside you as you need them. Blessed be.

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  10. Both my husband and I read your remarkable story of strength for Quinn and your boys. Having two little girls of our own, this brought us both to tears. We are Disney Vacation Club owners and would be honored to share with you a week of our points so you can see the smile on your childrens faces as they enter the most magical place on earth! There is nothing in this world more special than the smiles and laughter of our children. Our thoughts and prayers are with Quinn and your family. Please contact us at 516-477-4170 or jetfan1521@aol.com
    Sincerely, The Roesler Family (Rob, Kelly, Ava & Madison)

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  11. I am wondering how sweet Quinn is, and sending you all lots of prayers and love.

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