Fontan Recovery: Day 37

Building Legos

It appears that it is time for Plan B.

Thursday marked five weeks since the Fontan surgery. In so many ways, we are worlds better off than we were back at the beginning of April. Maddie has almost completely returned to her typical, silly self. She is climbing around on her easy chair, her bed, and anything else she can find in her hospital room. She speeds through the hallways on her tricycle, making the doctors part ways as she plows through their morning “rounds.” She giggles and laughs as she blows bubbles with the multiple packs of gum she’s received from family and friends. All dietary and liquid restrictions were removed this week (tactics they hoped would prevent fluid build up), so she can eat cheese sticks again and drink as much lemonade as she wants. But even with all that progress, for how amazingly well she looks and seems to feel, she still has one chest tube and she is still draining fluid.

Maddie's daily goals

The trend is definitely downward but unfortunately the drainage has not decreased enough. She ebbs and flows. Some days it’s 80 mL of output. Some days it will be slow for several hours and then dump 100 mL over night. Other times it will clog up in the skinnier part of the tubing with fibrous drainage, making us think that she’s finally come to an end, only to have it gush out 270 mL once the clog is “milked through.”

This morning, one of the Nurse Practitioners that we’ve come to know (we know almost all of them and a great many nurses) proposed an idea that seems crazy but a step in the right direction. It’s not a done deal, but she suggested that we finish out the remainder of Maddie’s recovery at home with the chest tube still in place.

Whoa.

Of course, this is not the plan I had envisioned for our escape from the hospital, but at this point I’ll take what I can get. It would mean much more maintenance on our part, measuring the output, disposing of the fluid, and many other tasks I would have thought above my pay grade. I’m willing to do it if it means our family can be back together.

She’s just so close to being done with draining that none of us, not one single person on her care team, can stand keeping her here as she slowly trickles down but is otherwise ready to go.

Is Plan B a perfect one? Are they actually going to go forward with it? No, not necessarily. Above all, we want her to be healthy when she comes home, so what they finally decide will hinge upon that stipulation.

And, as always, she could totally surprise us and dry up before the plan goes into effect. All she needs is two consecutive days of low drainage to demonstrate that her body is ready to take out the tube. Once they remove the tube it’s goodbye Children’s! They will send us home immediately! (And by immediately, I mean with at least a 4 hour wait because that’s how they roll here.) We might just, quite literally, run out the door!

So, this has been our week. Will she or will she not stop draining? The only question we want answered is the only question no one is able to answer. I apologize for not posting sooner but the reality of stagnation was too disheartening to share. I was waiting for something positive to report. Some sort of change we could all rally around.

Our prayer is that she will finally dry up. She doesn’t have to completely stop draining fluid, but she has to be under 50 mL for two days in a row. I can’t think of a better Mother’s Day gift.

Thank you one and all for your continued words of support and heartfelt prayers on our behalf. We are surviving, limping across the finish line with our faith strongly intact. I guess we can’t ask for much more than that.

Happy Mother’s Day to each of you who mother those around you and for all you women with a true “mother’s heart.”

7 thoughts on “Fontan Recovery: Day 37”

  1. Plan B is way better than staying at the hospital. Having all of you under one roof is way better than the way it is now. You can do all the nursing things and it will be worth it. When you shared your blog last week of them having to put the tubes back in, I thought at the time “why don’t they just send her home with the tubes in and teach Jeanne and Colin to take care of her?” If the drainage stops before they get Plan B in place . . . that’s all the better.

  2. Your not limping! You are strong! If not sprinting, you are walking very fast across the finish line. Look how far you’ve come! We love you!

  3. Sorry to hear there is a “snag” in the plan :-) I pray for less drainage and hope you have a good Mothers Day tomorrow. Hugs, Jeannie :-)

  4. I bet you feel like you are stuck in the movie Groundhog Day. I am sorry you guys are still waiting for the drainage to dry up. I pray it ends soon!

    I am relieved to hear how well, Maddie, is doing. So glad to hear that her spunk is back! That makes me happy! Her coloring looks so good in the picture in this post!

    Happy Mother’s Day to one of the most amazing women I know! And yes, I seriously mean that! Your faith, your patience, your diligence, the sacrifices you make, the way you are raising your children … all of it is awe-inspiring!

    We love and miss seeing you guys! Hopefully soon you will all be under one roof!

    XOXOXO

  5. So happy your little sweetie is up and about! Sending hugs and prayers that things will resolve so she will no longer need the chest tube! Happy Mother’s Day, Jeannie! You are one of the most amazing young moms I know!

  6. Happy Mother’s Day, Jeannie dear. You certainly are earning your “mother” stripes, and then some. I’m so proud of you. You exemplify what this day is really about.

    “Plan B” sound like a step in the right direction. Just being home will help the recovery process – for everyone. Loving thoughts and energy are coming your way from Atlanta.

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