Fontan Recovery: Day 8


NEWS FLASH: Maddie willingly took her medications today! Fervent, heart-felt prayers work, folks. How else can you explain being able to finally reason with this stubborn girl??

Her pain finally got the best of her late last night and early this morning, so not only did she willingly swallow the absolutely necessary medications but she also took the oxycodone pain reliever, another one she had refused and puked up earlier this week. Doesn’t she look more peaceful in the picture above?

Today has been so much better all around. She’s still on the pacer and still has underlying¬†junctional ectopic tachycardia (JET) rhythms in her heartbeat, but they’re hoping those are starting to resolve now. Her potassium levels are up and she’s eating and drinking like a champ.¬†She’s sitting up more and starting to use her right hand to feed herself.

working with dad

Our friends and awesome neighbors, plus Grandma Tuki and Aunt Melissa, came to visit today. We celebrated her victory over the oral meds. We cheered her bravery. Different neighbors stopped by last week (and brought me dinner!) as well other friends over the last few days. These visits remind her that people haven’t forgotten about her. Even though she’s not responsive when they come, I know it lifts her spirits. I know they’ve lifted mine.

She’s “blown out” all of her peripheral IVs and her arterial line which is awful but overall alright because she doesn’t need them for medications anymore. However, she may have had some infiltration, which means that the fluid leaked out of the vein and infused into the surrounding tissue. Not good. Her left arm and left leg (where former IV lines were placed) are swollen, tender, and causing her a fair amount of pain. Poor, poor peanut.

Despite this, she’s still progressing. We’re hoping that her left and right drainage tubes will come out after the weekend. Hopefully, she’ll be moved to the regular recovery floor soon after. Looks like our Friday goals are being met.

Check, check, and check!

6 thoughts on “Fontan Recovery: Day 8”

  1. Oh, that is wonderful news, Jeanne!! Thank goodness!!

    I know from personal experience how painful those blown out IVs are. My little veins didn’t like IVs either. Sometimes it seemed that pain is worse than the pain from the surgery! But I think it helped to give me something else to think about.

    Love you all!! xoxo

  2. Hi Colin and Jeannie, this is Daniel’s (across your house).
    Sorry, we didn’t know at first how serious Maddie’s surgery was. She looked healthy while playing around our neighborhood, so we were surprised to know what the surgery was about. We were wondering how Maddie was doing and very glad to hear that she is getting better!
    What we really want now is to see Maddie come back and play in the neighborhood again. We strongly believe this will happen this summer! Hope you guys take care as well.

  3. Seeing these pictures speak peace to my soul. She seems to be resting to comfortably in that first picture, and in the second picture, her skin color looks so good and she looks so much like the vibrant Maddie I know! Hooray for progress in the right direction! I can’t wait to see her in person!


  4. I love that she is progressing!!!!!! Hopefully the swelling will go down so her body can focus on healing. SO GLAD she is taking the necessary meds! She looks so much more comfortable now. Prayers are continuing in our home for Maddie and the family. It’s so hard to not be there for this journey to help out with your other sweet kids – I wish I was there for you … glad to hear that Colin’s family, neighbors, and friends are taking care of you guys! Please tell Maddie we love her! Lots of hugs.

  5. More good news for Maddie. I hope and pray that she will continue with her progress. She looks comfortable and her color is good in this picture. Mom, I hope you are getting some rest, I know how hard that is when your child is in ICU. Take care of yourself too !! Prayers going up for all of you.

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