Fontan Recovery: Day 7

Spa day

It’s been one full week since Maddie’s surgery.

So much has happened since last Thursday and at the same time we’ve barely inched along. The past two days since her heart catheterization and reopening of the fenestration have been good because her heart is beating so much better.  But they’ve also been bad because she’s becoming unreasonable about taking medications.

Once she came back to the ICU from the cath lab there was a noticeable change . You could tell immediately that she was improving. She’s been eating and drinking ever since, but she’s low in potassium because of all the pre-procedure fasting and days of barely eating from nausea while she was tachycardic. We’ve spent the last 48 hours trying to get her to drink Pedialyte, Vitamin Water, eat bananas, and anything else we could think of to increase her K levels.

She’s still in the ICU. There are two medications she’s receiving through IV that need to be taken orally before they can move her to the regular floor. She struggles taking anything that might remotely taste bad so it has been a full-time job trying to cajole her into cooperating.

But all that effort to eat seemed lost when we had to force her to take the two required meds by mouth this afternoon. She got so worked up about it that she let her gag reflex take over and she puked the entire contents of her stomach. The picture above is post puke fest. She has a no-water-necessary shampoo cap on her head to get the chunks out as best as possible. It’s just as fun as it sounds.

We’re all fed up. We’re all exhausted. We all want to go home.

Tomorrow is another day. Less drainage, higher potassium, better oral medication consumption. These are all great goals for a Friday in the ICU.

As ever, we are grateful for the many friends and family who continue to offer up words of encouragement, prayers, and hours of tireless service. Slow progress or not, we are truly blessed.

6 thoughts on “Fontan Recovery: Day 7”

  1. Thank you for the update, even if it is just one more thing you are having to expend your precious energy on. I am sorry you guys are all so exhausted and fed up. My heart aches to hear that. I wish there was some way I could wave my magic wand and take all your anguish away!

    I will adjust my prayers tonight to pray specifically for Maddie to be able to take her oral meds willingly, that her potassium levels will increase and that her drainage will decrease. I will also pray for you and Colin to have the strength you need to endure this trial!

    Sending lots of hugs, prayers and angels your way!


  2. Oh, she looks so pitiful! 🙁 I can’t believe it’s only been a week. It seems like such a long time you’ve been in this. And that’s from my out-of-hospital perspective! Hang in there!!

  3. Oh, gee, guys, what an awful day. I guess we can be glad that she is feeling a little spunky but I know you are all so tired. I also wish I could have a magic wand and just say Stop! and you get the whole week off with everyone being fun and well and lots of rest and then if you have to go back to it, you go back. It is no fun being Maddie but it is very lousy to be the parents of beloved child and others as well. We continue our prayers for you all for you all need them.
    Sending big hugs your way….

  4. I love how you didn’t sugar coat the explanation of her no water shampoo cap….”chunks”…… ????. I pray she doesn’t fight you on taking those meds so she can put her fight into the other parts of her recovery…..did you ever think that being a parent would involve so much creativity to get your child to take medicine!? Hang in there, Jeannie! Lots of hugs!

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