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Living While Healing Posted February 22, 2013 by Jackie Dooley

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I’m better after yesterday. Thank you, everyone, who reached out to me. I went to dinner with my amazing sister-in-law, Amy tonight and she even shared her chocolate-fudge-brownie-whipped-cream-drizzled-with-more-chocolate dessert thingy.

amy-brownie

There’s no way the combination of Amy’s smile plus THAT brownie couldn’t cheer me up. I also had a very delicious dinner (pre-brownie) with amy at McGillicuddy’s in New Paltz.

Ana got her labs drawn at our family physician’s office in New Paltz at 8:30 a.m. this morning and was home by 9:00. She was impressed with the phlebotomist there who she said “got the vein on the first try” and also didn’t use tape to secure the cotton ball after she was done – she used this stuff that sticks to itself so it doesn’t hurt when you pull it off. Painful dressing removals have become a sore spot with Ana (pun intended) and I. Medical professionals, listen up – children have nerve endings. Ripping tegaderm off of their skin HURTS – I don’t care how much damn adhesive remover you use. If the dressing is bigger than 1×1 square inch, it’s going to rip a bit of flesh and hair off. If you don’t believe me, then experiment on your own arm hair and then get back to me.

Dr. Lucchesi (the local family physician) called me at around 4:00 to say they got most of the lab results and had faxed them over to Columbia – which was really nice of her because we didn’t think we’d get the results back until Monday. She gave me a few results over the phone and the liver test that we’re worried about is still high. Unfortunately Maria did not receive the fax as of 5:00 p.m., so we’re going to have to wait until Monday for the results after all. BIG FAT BUMMER. I had also spoken with Maria earlier and she said that the test results could mean a lot of things – they did not necessarily mean that Ana’s liver is in rejection. It could also be from the liver regenerating or producing excess fluid. Ana’s still doing well on the low sodium diet, and Maria added another diuretic to Ana’s drug regiment which she explained will work with the Lasix to help reduce the fluid in Ana’s abdomen.

So now, in addition to tracking sodium, medication and fluid intake, we’re also tracking Ana’s weight. She’d gained 2 pounds from Wednesday to Thursday, but she stayed the same this morning. I’m hoping that’s a good sign that the diuretics and low salt diet are doing their job.

Ana missed out on her school’s Valentine’s Dance today. She did have a visit from a good friend though, which cheered her up. It’s the first time a friend has come over since she’s been home. I’m seriously considering rallying (begging) the school to have a spring dance in May so that Ana can actually go to a dance this year. In a swingy little sundress. With a cute, pixie-short haircut. What do you say, Michelle?? Please, please, please!

Good night, everyone. And thanks, as always, for keeping me strong.

 

 

8 Comments

  • Mary Chase February 24, 2013 at 11:51 am

    Jackie, your post re lunch with Amy affirms this quote from Thornton Wilder. “The happiness of life is made up of little things -a smile, a helping hand, a caring heart, a word of praise, a moment of shared laughter. We are most alive in those moments when our hearts are conscious of our treasures.”
    Sending caring thoughts!

    Reply

  • Larry February 24, 2013 at 8:50 am

    Amy and that brownie would cheer anyone one up! Fingers crossed for good results on Monday. I say a Spring Fling dance is certainly in order. I think that’s a MUST. Xoxo

    Reply

  • Judy February 23, 2013 at 10:57 am

    You sound so much better I’m glad you got out.. And now I really want a brownie fudge sundae!!!

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  • Natasha February 23, 2013 at 10:45 am

    I am so happy that someone came to see Ana!:)
    Natasha

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  • Susan Wishart February 23, 2013 at 9:55 am

    Again, I have to say, You guys are the strongest family I know.
    Its not easy keeping up with a diet of any kind for any reason and yet you are and supporting each other. Thats awesome!!!!
    I hope things continue to look up and get more positive every day. You all are an inspiration to everyone.
    HUGS

    Reply

  • Janne Dooley February 23, 2013 at 12:07 am

    Jackie, So glad your night out with Amy was so restoring for you. I missed my time with Emily and my visit with Ana since I have a hint of a cold. But this is what I think about the spring dance…. We produced a concert why not a dance next? Love you. xoxoxox

    Reply

  • Erica February 22, 2013 at 11:49 pm

    After so much cloudy progress over the past several months, I’d somehow seen the transplant as something clarifying. It’s so weird to discover cloudy progress post-transplant! Every single detail means something! Or not! I’ll tell you, that photo of Amy smiling and that brownie sundae perked me up, too. I love that you continue sharing here, because it all just seems like one hell of a journey, and I so appreciate the chance to cheer from the sidelines or update folks who ask me about Ana. I was at Adams in Kingston yesterday and saw an Ana flyer, and I was so excited! I gave the cashier an update, and another employee came over to listen, and they were so interested. Much love to all of you, and may many Amy smiles and brownie sundaes continue to dot your calendar. :) xoxoxo

    Reply

    • Jackie Dooley February 23, 2013 at 10:46 am

      Very well said, Erica. I was expecting this – fearing it, really. It was one of the key driving forces to us looking for a surgeon who could resect Ana’s liver so she wouldn’t need a transplant. Isn’t that amazing about Adam’s? Jim went in and thanked the manager the other day. I’ve been in there once since they put the signs up and it’s a little surreal. I miss going there each week with Ana. Can’t wait until she’s able to have the salad bar again.

      Reply

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