Fontan Recovery: Day 1

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It was late by the time we finally got to join her in the ICU last night, but what an amazing sight she was to see.

I apologize to those of you who are sensitive to graphic medical images but I need to post this picture. It shows just how strong this little girl is. Plus, Maddie is super fascinated looking at the one from her last surgery. I know that she’ll be proud of this one, as well.

Up until about 5AM this morning, she was completely sedated. Any attempts to waken her were wasted. The poor thing was exhausted. Her care team had a goal to extubate (remove the breathing ventilation tube in her nasal passage way) before the shift change at 7:30AM.

Maddie made the goal! Unlike last time with her Glen, she was able to start breathing on her own less than 12 hours post surgery. Talk about a tough girl! So far, her recovery is right on track with their expectations.

We have a long road ahead of us. The next big hurdle is fluid drainage. She currently has three chest tubes to allow the extra fluid created by the pressure changes in her lungs to flow out. They are painful. The doctors are pushing to get the two side ones removed as soon as she’s ready, but we’re not sure when that will be. The central one will remain even longer.

Right now she is still extremely sleepy. She wakes up occasionally, with wide eyes, scared and unaware of where she is, only to realize that she is tied down by myriad tubes (other lines you see above that are plugged into various parts of her body monitoring medications, fluids, and systems), as well as arm restraints to keep her from pulling out the lines. She is thirsty. All she wants is chocolate milk. She cries for it with her little, weak voice made raspy by the breathing tube she had removed. It breaks my heart to tell her she’ll have to wait to get it. The nurse swabs her dry mouth with a moist mint-flavored suction sponge instead.

I am exhausted. I stayed all night on the couch turned fold up bed and slept for maybe four hours. Colin went home to be with Jake, Joe, and Warren. Family, as well as wonderful friends are caring for them while we tend to Maddie here. He’ll be joining me soon to spend the day together with her. I’ll leave this afternoon and he’ll take over. We’re planning 18 hour shifts in this fashion.

We could not do this without the absolutely incredible support from our family, our ward family [church congregation], and our amazing neighbors. Truly, we are blessed beyond measure.

The next several weeks will be trying but we know we can endure. Maddie proves over and over again that she is tough. She’s a fighter. We have the Lord on our side and all of you.

18 thoughts on “Fontan Recovery: Day 1”

  1. I’m so glad to hear she is doing so well after the surgery! I still remember seeing her in the hospital after her 2nd surgery, she was so little. Remember to take care of yourselves! She needs a healthy and strong Mama and Daddy! xoxo

  2. I thought I was ready, but this made me cry. My heart hurts to see what she has to fight through. She will certainly have plenty to be proud of when she gets through this! Hang in there, Mama. I remember how much it hurt to have a little one with a broken leg who I couldn’t hold to make it all better. I can’t imagine. Still praying for you. Love you all so much!

  3. So SO glad to hear all the great news. She is such a great fighter. We are continuing to pray for you — much love!

  4. All the tubes she is connected too brought tears to my eyes. This is hard on parents as well as little girls. Our thoughts and prayers are with your family.

  5. She *IS* an absolutely amazing sight! What a miracle in so many respects!

    We are praying that she will continue to recover quickly and that she can meet the goals her care team has set for her. Hopefully she can start eating and drinking soon. It must be incredibly difficult to see her scared, confused, restrained and thirsty! It pulls on my own heart strings! Stay strong, my dear friend, and try and get some much needed rest.

    I am moved beyond words with all the faith and all the people that have come together for sweet Maddie. Team Maddie is huge, especially since the Lord is on her side.

    XOXOXO

  6. Thanks for the updates amid your life being turned upside down for a while, yet again :-). Hang in there, Jeannie! I am picturing Maddie looking at the picture now and her talking my ear off (in a good way) about it and then noticing me chewing gum and asking me to see it, what flavor it is, and where I got it…LOL. PRAYERS are continually a part of the Stock family for Maddie and your family :). Hugs!!!!

  7. It hurts my eyes to see sweet Maddie in her current state. But my heart sees the love of her mother, father, and those who love you all. The greatness of modern medicine and the blessings of a loving father in heaven. She looks beautiful!

  8. So happy to hear that Maddie’s recovery is progressing well, Jeannie! We continue to pray for her, and for all of you. Love you!

  9. So happy she came through strong! My prayers are with you as are our family prayers! We love your wonderful family!

  10. What a great news Jeannie, thank you for keeping us all post. Maddie’s so strong and from such an early age. Love her courage, Hope she can get her chocolate milk soon. Is such a breaking heart to imagine for all things her little body and mind is going through. I hope to be there to been able to help you, but, for sure my prayers are with you and your family. Tell Maddie that she is my younger hero and that I love her 🙂 you are the most awesome parents!

  11. Maddie is in the Lord’s hands and this is nothing but witnessing a miracle! We are praying for you daily. What wonderful parents you are- great examples for us all.

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