Fontan Recovery: Day 24

Colin and I have, what they call, “Hospital Brain.” Confined to the same hospital room, day in day out, with interrupted sleep, constant beeping from machines, hours of waiting around, and moments of intense stress we have been pushed beyond fatigue. We are so sleep-deprived that our sluggish brains cannot function anywhere near to normal capacity. We’re at about 30%, if we’re lucky. Sometimes that’s combined. Think early stages of caring for a new born baby and crank it up at least 5 notches, then remove the joy and wonder of cuddling and first smiles that make it all worthwhile and you’ve got the picture.

Madds on wheels

But this Maddie girl. She continues to astound us with her fierce determination and resilience. This girl is beyond tough. She is the very definition of strong.

Who else could be days out from her third surgical procedure and, with three chest tubes hanging down, ride a tricycle around the hospital floor? Multiple laps, mind you.

(This fine video brought to you by Google + courtesy of the Auto Awesome function.)

Is she jolly? Does she laugh readily? Does she cooperate easily? Does she even interact when friends stop by to visit. No. But she is worlds better off than earlier this month.

Somehow, despite the pain, the anxiety, the fear that come with healing on the surgical floor, Maddie manages to forge onward. She gets up and moves around, walking from the bed to the chair to the commode. She swallows pills and deals with the fluctuations in all the medications, the blood thinners, the diuretics they’re prescribing to dry up the fluid drainage. She suffers through the dressing changes as tubes and catheters continue to be removed, skin red and sometimes blistered and always the adhesive too strong for comfort. Every day she bravely faces the blood draws required to obtain just the right INR levels for her now life-long dependency on Warfarin.

But here we are, three weeks and three days into this thing and at long last we are finally seeing the end of the tunnel. On Friday, they removed her PICC line and the last of her IV medications. Yesterday, they removed the mediastinal tube, which leaves two remaining chest tubes.  Her total drainage output on Monday was 700-something mL for all three. This morning, it was just under 100 mL total. Steady progress. We’ve watched her improve right before our eyes.

Which brings me to my last thought. We are only able to be here with her everyday, watching and caring for her through these long hours because of all of you. Your prayers, your kind words of encouragement, your visits, your babysitting care, your meals, your gifts, your thoughtful treats. All of them have made it possible for us to see our little girl return to health.

Several nurses have commented on how saddened they are by the children they care for here who are without their families because of work constraints and distance, some residing in far away states. But we are able to be here every minute because of the love of our family and friends.  Your support is an answer to our prayers. God has answered them directly through you. Our gratitude is immeasurable.

We are nearly there.  Please bear with us just a little longer. We can hardly wait.


7 thoughts on “Fontan Recovery: Day 24”

  1. I am impressed with the drop in fluid output! That is great news! Steady progress indeed! Here’s to hoping and praying it will continue moving in the right direction!

    I am sorry to hear about the “hospital brain” you and Colin are having to deal with. That has to be rough … beyond rough! I am praying that the Lord will continue to lend you strength.

    Keep hanging in there! You’ve got this!


  2. I am in awe of Maddie and in awe of your family’s resiliency and strength in supporting her. That picture of her riding the tricycle hooked up to all of those machines is incredible. Sending love to you all.

  3. I cannot imagine that level of exhaustion. You are in the very deepest trenches of parenting, which I pray is a path to the very deepest joys! This video is so inspiring!

  4. I love the video, and love the giddy music you put to it :-). I imagine Maddie watching it on repeat several times, lap after lap :-)…..hang in there! So glad you are able to see the light at the end of the tunnel now!!! We love you all and pray for you all! Hugs!

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