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PICU – Day 4 – 8:30 a.m. Posted February 8, 2013 by Jackie Dooley

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“But no matter how much she stretched, she could not touch the moon. “Papa,” said Monica to her father, “please get the moon for me.” -Eric Carle

Days start early at the hospital. At 6:30, Dr. Ovchinsky came in to examine Ana and give me an update on her latest labs. So far, everything looks great including her liver function. Her white cell count is a bit high and she’s producing copious amounts of fluid from an abdominal drain. Dr. O said sometimes this fluid can get infected and this may be the case with Ana. It’s nothing to be concerned about (she assured me) but they will be starting her on antibiotics to treat this today.

The drain sounds alarming, I know, but it’s really not as scary as I’d anticipated. It is placed in all liver transplant patients and is intended to collect the fluid build up in the abdomen after surgery. Since Ana’s tumor was so large, and the new liver is much smaller since it is just a partial graft, this causes more fluid (the reason for this is not completely understood). So this drain had to be emptied at least once an hour, and even so it leaked many times. The nurse had to change the dressing around the drain and her bedding and gown multiple times throughout the night – which equated to a pretty poor night’s sleep for both of us. Whatever – the ICU staff is pretty much doing everything and that is making it easy for me to sit and relax a lot more than when Ana was at Westchester. The fluid output should lesson over the next week or so, although sometimes patients do go home with the drain.

One of the surgical residents came in this morning and removed the dressing from Ana’s incision. He said it won’t be replaced with a new one. It is difficult to see the incision because it is covered with steri-strips (small white bandages a bit thinner than ordinary scotch tape). It looked surprisingly good. I asked the resident if the scar would be worse because they had to open her up again after the transplant when she had the clot. He said that they actually had an opportunity to make the incision more cosmetic the second time around, since they got a better look at its shape. He also said that since the skin was somewhat loose due to being stretched by the tumor, she may experience less pain than is typical after abdominal surgery when the skin is tight and pulls.

Speaking of pain, right now it seems pretty manageable. The pain specialist ALSO came in this morning and said that they are going to stop Ana’s continuous drip of pain medication because she’s been so sleepy, and she hasn’t really pressed the pain button (this is a button that enables Ana to release an extra shot of pain medication every ten minutes depending on her pain level). The thing that’s bothering her the most is the central line which is in her neck. It hurts and it’s very uncomfortable. They have begun talking about taking it out either today or tomorrow. They’re being cautious because of the issue with clotting and a few other things that tend to send patients back to the OR after surgery.

Ana seems to have a good appetite (the pain specialist was shocked). She has been munching on some cheez-its this morning in between dozing. She’s back on a regular diet – a tray of hospital-issue breakfast foods showed up around 8:30 a.m. (cheerios, orange juice, a questionable looking cube of eggs..)

She is on many medications including antirejection medication, pain meds, steroids, blood thinners, antibiotics and at least one anti-fungal. I have a print out of several of the medications she’s on now which I plan on reading today. She’ll eventually be discharged with a HUGE amount of medication and can expect to be on 10 – 12 pills at least twice a day. They will taper her off most of this medication over the next few months.

She is getting another sonogram right now. The big goal for today is to get her out of bed and sitting in a chair. They may also remove the foley catheter. These are all necessary steps to transitioning her out of the ICU and onto the floor.

Today I discovered that one of the family lounges in the PICU had murals all over the wall which were from a book that was one of Ana’s favorites. It was called, “Papa, please get the moon for me.” Janne got it for Jim as a father’s day present so he could read it to her. I think she was about 7. She loved it. We must’ve read it to her 100 times. I stood in front of one of the murals and cried. It just seemed like a positive sign that we’re in the right place, you know?

papamoon

22 Comments

  • Kiku Collins February 8, 2013 at 8:57 pm

    We never stop thinking of you all. If we can do ANYTHING to help just let me know! Lots of love! xoxo

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  • Carla February 8, 2013 at 8:27 pm

    All of you are an amazing team with so mush talent every where you look .You have so many friends, aquaintences and talent around you. Ana is the cortex of an amazing force just as her voice captures the hearts and ears of many . I just get a very strong feeling comming over me. Ana is such a strong willed little girl; she hasn’t got an inkling of a negativea though; nothing but good news and pulling through all of this as though it was but a lousy dream. Hurray! for chocolate chip mint ice cream, very good choice Ana. That would be mine also. May everyday be a good choice.You Go Girl. When I close my eyes every night I can see you,with your chocolate-chip mint……”You have some on your chin”
    Carla

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  • denise dibella February 8, 2013 at 7:07 pm

    So happy to hear Ana is making strides. Before you know it she will be running around giggling and you will be basking in the sound of her laughter. Thank you for sharing your amazing journey, Im not much of a reader, but I so look forward to your updates everyday and Im amazed at how you manage to put into words exactly how you feel and really bring us all right there in the moment with you. CHEERS FOR ANA!! Prayers fo get answered :)

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  • Vanet Uvino February 8, 2013 at 5:55 pm

    Ana,
    You are in my thoughts and prayers. Such a strong and brave girl you are. You are definitely missed by all that know you and your family. Soon you will be back in the swing of things hanging out with your friends. I don’t personally know you but I am a friend of Cindy Berryann, Lauren’s grandma. Cindy has been keeping all of us that work with her updated on your progress. Ana, keep fighting. You’re an angel on earth. God Bless You Sweetheart.

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  • Allyson Uzzle February 8, 2013 at 5:32 pm

    Jackie, Thank you so much for keeping the information flowing. Your words and actions are so inspiring. I am so happy that Ana is making the gains you describe. Please tell her we are all holding her place in the class, the play our hearts. All our love, Ally, Olvie and Andy

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  • Janna February 8, 2013 at 4:22 pm

    Jackie, you ought to get a Pulitzer for this blog. I have no idea how you manage to make so many beautiful connections considering being under slept, under fed, and under washed. Thank you again for sharing, and I am overjoyed that Ana is still soaring ahead as she should be. Much love!

    Reply

  • Leah Glennon February 8, 2013 at 4:11 pm

    Wow Jackie. What a time. Your writing is so vivid, I feel like I am ACTUALLY there with you, and not just in spirit. Sounds like Ana is coming back to herself bit by bit. I loved hearing that her appetite was shocking! Go Ana! Warms a mother’s heart! You are on the other side of the nightmare, finally. All love to You, Ana, Jim and Emily. xxx

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  • Lisa Krongard February 8, 2013 at 3:52 pm

    I am laughing at the questionable looking cube of eggs LOL!!!!!!

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  • Kelly February 8, 2013 at 2:26 pm

    Whew tears! What a wonderful writer you are. And great news that Ana is eating and things are going well. You are both so strong. Kelly and Cleo

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  • Erica February 8, 2013 at 2:09 pm

    “On Saturday, [Ana] ate through one piece of chocolate cake, one ice-cream cone, one pickle, one slice of Swiss cheese, one slice of salami, one lollipop, one piece of cherry pie, one sausage, one cupcake, and one slice of watermelon…” :)
    A tiny crystal of healing for glorious Ana from every single snowflake that falls from the sky.
    xoxoxo

    Reply

  • Betsy and Jimi February 8, 2013 at 1:22 pm

    It does sound like this is the hospital you are meant to be at. We are so glad that she seems to be progressing so nicely. We are thinking of all of you all day, everyday. Sending our love, our good wishes and our positive thoughts.

    Reply

  • breida February 8, 2013 at 11:55 am

    Hi there-
    You don’t know me but. . .
    I wrote you once before – as we had similar battles with insurance companies (with similar outcomes).
    I am so pleased to hear that things are going well. SO PLEASED!! I am sure you already know this – but there is a ime limit on how long they will leave that central line in there – have they discussed using a PICC line instead? It sounds freaky and scary but it is SO much better and really not bad at all. The risk of infection is MUCH smaller – I’ve taken care of them on TWO members of my household. It’s doable.
    The snow has started to pick up nicely over the last few minutes – glad you are there with your girl.
    I decided to write again to let you know (as someone else commented the other night) that your circle of support is wider than you can even imagine. I truly believe that the power of positive thought helped to save my husband’s life – know that SO many are sending LOVE & LIGHT your way.

    Reply

  • Michelle Hughes February 8, 2013 at 11:53 am

    Right on, Ana! What an amazing, strong, and determined person you are…not to mention, talented. Here at HMS, we are all so happy to finally be at this point with you and are reading about and talking about your progress numerous times a day.

    You rock!

    Michelle and the whole HMS Staff

    Reply

  • jennifer February 8, 2013 at 11:50 am

    wow! it’s like once you get off in the right direction, it’s just full speed ahead. even though you’re aware of what lays ahead, you sound relieved now. it’s a wonderful thing that ana is progressing so well. we should never underestimate the resilience of the human body and spirit.
    i am so happy for you all.

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  • Reta Sorge February 8, 2013 at 11:24 am

    I truly think you are in the best place! Her progress sounds wonderful!

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  • Maia Rossini February 8, 2013 at 10:54 am

    We love Columbia Pres (I think that’s where you guys are, right? If not – disregard). Anyway- FF has had all her surgeries there and they have never been anything but awesome. So glad to hear everything is going well!

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  • Judy Krongard February 8, 2013 at 10:46 am

    I got teary reading this..with relief. You are defiinitely in the right place, and this is the beginning of Ana’s wellness. I love you

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  • Natasha February 8, 2013 at 10:46 am

    I am so glad that Ana is able to sit in a chair(: I am missing at Ana at school D: About how long will it take Ana to recover?
    From
    Natasha

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  • Elena February 8, 2013 at 10:28 am

    Thinking of you all everyday. This progress is uplifting. Day 3 typically is the worst, so through the storm you continue. You and ana are so inspiring and strong! Lots of love!

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  • Mary-Ann and Natasha February 8, 2013 at 10:26 am

    Hi Jackie – it sounds as though things are on track and I am so glad that Ana is doing well – or at least better than expected for where she is in treatment. I was wondering if you have an idea how long Ana will be in the hospital – is there a ball park amount of time. Natasha would love to send a care package so let us know when this is possible. thanks and have a good day – the snow is not too bad yet – just a sprinkling but it was a good decision for you to stay put for now. take care of yourselves, Mary-Ann, Natasha and family.

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  • Bonnie MItchell February 8, 2013 at 10:21 am

    SO much good news here, and we are SO grateful! Yay Ana, Yay Jackie, Yay team!

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  • Stephanie Ellis February 8, 2013 at 10:21 am

    Wow, that is amazing about the mural. It feels like a sign. So thrilled to here how well Ana is doing. I love how the pain specialist is impressed that she is eating. Go Ana! I hope the central line in her neck can come out soon.

    Reply

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