Fontan Recovery: Day 28

We are so close. So close, we can taste it.

After Maddie’s chest tube popped out on its own, we figured they would be ready to remove the last tube before the end of the week. We were right. Today, she is tube-free! Four weeks to the day they were placed in.

Zero tubes

“Now I have zero tubes?” she asked in disbelief. She couldn’t wait to tell her brothers the good news.

The doctors teased us by suggesting that she could go home as early as tomorrow, but the x-ray this afternoon showed there was too much fluid in the left pleural cavity from where the chest tube slipped out prematurely. It’s not unexpected but it is disappointing. A weekend discharge seems more likely now.

In order to prevent placing a drainage tube back into that cavity, for the next few days Maddie will wear an oxygen mask to help dilate her vascular system and will increase her diuretics. Hopefully, this combination will allow her body to reabsorb that extra fluid.  Exercise and increased respiratory activity also make a big difference.

Oxygen

She’s not so crazy about the mask but the exercise, especially in the form of tricycle riding, is just fine by her.

Finally, after 4 weeks of confinement to the hospital, Maddie was able to go outside in the warm sunshine. Spring has been more like summer these last few days (glorious!), with temperatures in the high 80’s. This little girl was as pleased as punch to cruise around the hospital playground on her Radio Flyer and soak up the heat.

(Colin’s cinematography shines as he placed it in yet another darling Google+ AutoAwesome video montage.)

We are trying so hard to be patient. Above all, we want her to be healthy when she leaves. We certainly don’t want to have to come back because of preventable complications. But we are so anxious to have her home. We’re at mile 12 of 13.1. Sometimes that last leg is the absolute hardest.

Our prayer tonight is that her pleural effusions (the drainage) will clear up enough for her to be healthy.

Thank you. Thank you to each and every one who has prayed, shed tears, and cared for this brave little girl. Your support has made all the difference. Through all of this, we have felt your love and the love of God. Heavenly Father has watched over our family and has led us by the hand to endure, even at times when it all seemed too much to bear. We head to this finish line knowing that we have been carried so much of the way.

And now we wait for Friday morning’s x-rays.

4 thoughts on “Fontan Recovery: Day 28”

  1. So incredibly thrilled to hear that Maddie now has “zero-tubes!” That is the best news I have heard all day!

    I am beyond relieved to hear you are almost to the finish line! What a journey you have endured! I can’t wait for all of you to be under one roof again – there will be much rejoicing when that occurs!

    XOXO

  2. Yay! Again, love Colin’s video! Prayers still goin on over at the Stock house :-). Hoping this last leg of the race comes sooner rather than later! Hugs!

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