Fontan Recovery: Day 26

Maddie was sitting on the easy chair, playing with the specialist from Child Life┬áServices. Colin was trying to answer work emails. I was painting my finger nails. Another morning of killing time on the surgical floor when all of a sudden Maddie cried out, “Something’s leaking!” although we heard it as, “Something’s itching!” so we tried to get clarification. As she became more frantic, we peeked under her hospital gown to check.

Her left chest tube had come out!

Pleural effusions were gushing out of her chest under the detached bandage and falling tube. I rushed out into the hallway to grab her nurse and four more followed me back in. It was a flurry of gauze and tape and tears and screams and phone calls to the doctors and nurse practitioner. They tied off the hole and all was calm again.

The fluid continued to leak for most of the day, despite the suture. We’ve been through at least 4 bandage changes but it seems to have finally slowed. It obviously needed to drain so better out than remain in, we all agree. A chest x-ray was taken soon after and showed that her lungs were still fairly clear. Her oxygen saturation and respiratory rate seem to be fine, as does her breathing.

Since the tubes were draining less and less every day, the team was already considering taking them out this week. It may be that this premature extubation will end up being fine. Her body may have been ready anyway. But the fear that we have tonight is that they will end up replacing the tube because the fluid may continue to accumulate, and with nowhere to go it will sit on her lungs and cause breathing problems.

The thought of inserting another tube, with another surgical procedure requiring more anesthesia, makes me want to curl up into the fetal position and polish off this entire bag of dark chocolate covered pomegranates that Tami brought us. I just can’t face going backwards again.

So, tonight, our prayers continue to be that Maddie’s pleural effusions will dry up, that her lungs will be clear, and that she will not require the chest tube to be replaced.

Maddie blows bubbles

The picture above is Maddie blowing bubbles. Look at her standing, laughing great big giggles and enjoying her growing strength as she works hard to recover. I pray that she can continue on this path of healing and not have to make a U-turn.

I’m watching and re-watching this video from yesterday to remind me that progress happens, despite the set-backs.

7 thoughts on “Fontan Recovery: Day 26”

  1. I didn’t read this til the 30th, today. I hope she made it through the night without your fears of tube replacement. I am hoping her body just said, enough of these tubes! Sending love your way…you’re all are doing remarkably well considering everything.
    Hugs and kisses….

  2. I love this video!! That’s the Maddie I remember :-). So sad you had a long night….by reading your next post it’s great news!! Hugs!

  3. When I read this late last night I was heartbroken for you guys. How terrifying to have the tube fall out and how dreadful to endure the possibility of doing yet another surgery! I am incredibly grateful she doesn’t need one!


    P.S. Seeing her smile and *your* smile brings me immense joy! Love those faces!

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