Fontan Recovery: Day 30

Hospital room

One month. We’ve been here one month.

It’s not completely shocking to still be at the hospital, but when we were so close to finally leaving, only to take a step backward in recovery, it has started to feel claustrophobic. Like we’re never going to escape.

Especially yesterday. Yesterday, Maddie had not just one but two tubes placed back in her chest cavity. They are smaller than the previous ones placed in during her Fontan— almost like straws– but they still hurt. They removed several hundred mL of fluid from her left pleural cavity, as well as some air from the right.

Going to the OR

She was scheduled for 2PM surgery but the cases before her ended up being more complex than they hoped, so she was pushed back until 5:30PM. That was 18 hours of fasting. No food, no water. She didn’t eat until 9PM. She kept telling herself throughout the day that when it was all over she would get to eat her dinner. Chicken noodle soup. That’s all she wanted.

Yesterday was painful in every way imaginable. Seemingly endless waiting filled with frustration and anxiety. Over and over she would repeat the steps they would take in surgery, to get it straight in her mind and cope with her fears.

“First, they’re going to put the mask on me?”

“Yes,” we would say.

“And then they’re going to do three things? They’re going to cut me, then they’re going to put the tubes in, and then they’re going to put the bandage on?” she’d whimper. “And they’re going to be quick?”

“Yes,” we’d reassure her.

“And I’m not going to feel them cut me because I’m going to be asleep?”

“Yes,” we soothed.

And then she would cry because, above all, she was terrified of the anesthesia mask. Calming her fear while stifling our own anxiety is thoroughly exhausting.

The procedure went well. They did what they needed to do and we don’t doubt the necessity. It is just unbelievably awful to revert back when we seemed to be making such progress.

And it’s in these moments that I feel the sinking weight of bitterness try to consume me. The whys and the “how much more does she have to endure” questions creep in to discourage. Maddie feels it too. She woke up this morning angry. Angry that she is pain, that she has tubes again, and that she doesn’t get to go home yet.

Because, you know what? This sucks. I hate this. I try desperately to remain positive, but today I’m feeling trapped. It’s horrible to watch your child suffer emotionally and physically over and over again for 30 days. The pouring rain outside, in contrast to the past week’s warm sun, reflects my dark mood quite nicely.

And yet, it’s this same little girl who is suffering through these pains who teaches me how to endure. The morning was rough until she said, “Mama, I’m sorry I was mean to you,” and then she moved on. This afternoon she laughs. She finds energy to play with her toys. She continues to wow the nurses with her self-sufficiency. How can I have a bad attitude when she clearly hasn’t given up?

Before the first surgery, Colin gave me a blessing of comfort. The words still echo in my mind. He said that the burden of the emotional pain of this trial would not be removed but that I would be able to endure.

I look at my strong little girl feeding herself, sitting up in the chair, breathing room air all on her own and know those words are true.

We can do this. Just a little longer.

13 thoughts on “Fontan Recovery: Day 30”

  1. Watching your child suffer is truly horrific. Watching your suffer as they watch their child suffer is pretty horrible, too 🙁

    We love you all and hope this journey is about to lead back to home soon.

  2. Often times enduring … especially the last little bit … is what trips me up the most. Here you thought you were running a half-marathon, but unbeknownst to you, the course was changed to a full on marathon, with some bonus miles thrown in at the end.

    Oh Jeannie, I am so sorry! Sometimes it hurts to be brave. Sometimes it hurts to be strong.

    Bitterness. Discouragment. Sometimes you simply have to let yourself feel those emotions, wade through them, and then after you feel them and share them, you are able to once again feel light and comfort. {And of course, often times you find yourself doing the same cycle again. Rinse. Repeat.}

    I am thoroughly impressed by Maddie’s determination and the resilience she possesses. Isn’t it amazing how healing hearing your little one exclaim, “I’m sorry Mama!” can be? Those words can instantly soothe your aching soul. Truly little children are often teaching us adults.

    Keep running the race, my friend. The medal you will receive at the end will be worth it. So very worth it!

    Sending prayers and positive vibes your way!


  3. You are right, it has been way too long. But as exhausting in every way that it has been and will be for a bit longer, you are all still there in mostly one piece. Maddie is alive and fighting and you are too. Hang in there. Hugs to you all….

  4. Oh, Jeannie 🙁 so sorry your day has been all around terrible… may feel like you have succumbed a little to the bitterness of it all, but to me you are stronger than I ever could be! Please call me or text me anytime you feel the need to vent (I’m serious) or get bored while staring at the walls :-). Love you, Jeannie! Hugs!

  5. Your words, Jeannie, are beautiful. It’s been a long time. I’m so grateful you received a blessing and I’m thankful you have the gospel and the knowledge that you can derive strength from our Savior. Also, so many friends and loved ones to buoy you up. Praying things will be all downhill from here on out!

  6. Ah Jeannie, my dear. I feel your frustation and pain coming through the page – such a strong writer you are. That you are able to articulate so well what you and Maddie are going through is a gift – in so many different ways.
    I don’t know what a “blessing of comfort” is, but I am quite confident that you are a blessing of comfort to Maddie. And to me, just knowing that you are there beside her (and vice versa). Everyday I check in and when Maddie soon goes home with you and Colin, I’m coming out there to see the victor enjoy her spoils. 🙂

  7. Sometimes the bravest and strongest moments are the ones where we admit the cold, crappy truth. There is nothing fair about this for you or for her. I so wish there was some way that I could ease this burden, something more than prayers and dinners, but I’m just as powerless as you are. So, I’ll sit with you in the hard emotions and walk along side you and let you know that you aren’t alone there.

    I’m rooting for you. Both of you. We still pray for you guys every night.

    You may not be able to see the finish line, but it is there and in the meantime I pray that you have the strength to feel what you feel and endure it.

  8. Truly I am amazed at how well you are able to convey these emotions and trials that you are suffering through. You are a gifted writer because no doubt everyone who reads your blog ends up with tears in their eyes because we understand how you are feeling. You and Maddie are amazingly strong. I love the hope and resilience that children offer us. Wish I could do more for you but, on this fast Sunday you and your family will be in our prayers as always.

  9. In closer looking at this pic, I love that you are in your iso garb on the gurney with your girl. It brings back a memory of my sis in hospital a long time and I just crawled in with her and hugged her. I know Maddie loved it. Hoping things are getting better.

  10. Wow. It’s been a couple months since I’ve caught up on here, and what I’ve missed!! What a rough road you guys have traveled this past month. My eyes are tearing up and my heart is aching as it brings me back…but in reading, it sounds like there’s a whole new aspect dealing with her emotions this time as well- so HARD!! I can’t imagine, yet- I know it’s in our future too and will someday be a reality we have to face again. Lots of love to you guys and I’m so sorry I missed all this and couldn’t add my prayers!! But no doubt now I will be, and I’m so glad that Maddie girl is a FIGHTER. She is so so strong. Love your family!! (and so thankful for your amazing neighborhood- sounds like you’re being well taken care of)

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