Fontan Recovery: Day 3

The lonely walk to the Forest Wing

The lonely walk to the Forest Wing

PHOTO CREDIT: Colin

Seeing your child suffer is probably the worst thing you can experience. Especially when there is nothing you can do but give it time. Maddie is in pain. She’s trapped in a hospital bed with tubes attached at every which point of her body. She desperately wants to go home but the end isn’t even in sight.

If you couldn’t wade through the technical post from yesterday, here is the gist: Maddie’s fontan restructuring has created a ton of extra fluid in her lungs caused by the increase of pressure. Messing around with her heart in surgery (and the blood transfusion she required in procedure) doesn’t help with her body’s normal electrical currents for blood flow. Subsequently, she’s dependent on an external pace maker to regulate normal heart beats and three different tubes coming out of her chest cavity to allow the extra fluid to drain.

None of these adjustments feel good. In fact, they make her quite miserable.

This poor little girl. Today was rough. This morning she screamed out in frustration, using the last of her strength. After that, it was a silent protest of listlessness, lethargy, and general sadness. She is already fed up with being at the hospital and we’re only on Day 3.

She continues to make small strides. Today she kept all her food down and used the bathroom completely. They keep trying to remove the pacer to allow her heart to beat normally on its own but it always ends up plugged back in after she becomes tachycardic again.

And as we suspected would happen, the extra fluid from her chest continues to drain and drain and drain. Pleural effusions, or the fluid buildup in the lungs, are common and expected after Fontan surgery, but because her Fontan is more complex, thanks to her dextrocardia and other abnormalities in her anatomy, the output is greater than they want to see 3 days out.

So, if you’re looking for specific items to pray for to help her, here they are:

  • Maddie’s heart will beat regularly on its own
  • The extra fluid or pleural effusions will dry up quickly
  • She will be comforted and feel peace until it’s time to go home

As soon as her heart can beat without irregularity, she can at least leave the ICU. She’s checked some good things off her recovery list. Let’s hope these next goals get met soon.

As always, we are thankful for your love, support, help, and prayers. They are what keep us going.

9 thoughts on “Fontan Recovery: Day 3”

  1. Indeed that walk looks very lonely. And long and forlorn. Oh my sweet, dear friend! I am grateful for the small strides she has made today, but I will now begin praying specifically that her heart can be strong enough to beat on its own.

    And of course, we will continue to pray for peace and comfort for your entire family!

    {{{HUGS}}}

    XOXOXO

    1. I am so grateful for all the information you are sharing with all of us. Wish that I could take this burden from you but, thanks for giving us specific things to pray for. Love you all.

  2. Looks like a jail hallway. And I should know. Oh, Jeannie. How strong you are. Am following daily and sending all my energy your way. xxo Aunt Lee

  3. Thank you so much for the detailed post about her recovery process. We are keeping all of you in our prayers each day.
    X0

  4. Dear Lord,
    I come to you this morning with prayers for healing little Maddie. I pray that her heart will soon beat on it’s own, the fluid in her lungs will clear up and that Maddie herself is comfortable and at rest as her little body continues to heal. Lord, we pray for the medical staff to continue to be guided by your loving hands to heal Maddie and Lord please, allow her mom and dad some time to rest and heal in their journey also. Give them strength when they are tired, renew their faith when days are tough and thank you Lord for blessing Maddie with wonderful parents and brothers as well as a dedicated medical staff that care for her during this recovery period. Lord, we thank you for all of our many blessings and love that you provide for us each and every day…Amen

  5. Love the prayer specifics! It helps to know exactly what is most needed. We love you guys. Prayers, prayers and more prayers are coming at you! xo!

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