11 Days After the Fontan

Maggie's Fontan was 11 days ago and we are not exactly where we hoped to be but we are were they prepared us to be.  When I asked her surgeon how long we would be in the hospital, he said to prepare for 3 weeks.  Of course, I asked the other heart mamas too and the range was 10 days to 3 months.  So I set my hopes on 10 days and prepared my calendar for 3 months.

It looked like we were moving toward the 10 day goal until about 4 days ago.  Maggie's chest x-ray took a dramatic turn for the worse and her drainage began to increase and turn cloudy.  That cloudiness indicates that her lymph system is draining into her lungs and that has required more aggressive treatment.  She also has a small amount of fluid around her heart that requires extra measures.  So as I was told today, we might be here a while.

Mornings are definitely the toughest.  After being woken up multiple times in the night for assessment, Maggie starts every morning with a 4:30 am chest x-ray that is followed by IV meds, blood work, rounds, dressing changes, and tube drainage.  She then gets PT and respiratory therapy.  By 11:00 she is pretty traumatized and exhausted.  I keep her up until lunch and then we all crash for a few hours.

It breaks my heart to hear her cry out "I want to be all better" and "why are you hurting me".  Sometimes I want to scoop her up and run out and then other days, like today, I just sit there and cry with her.  I hate to see her suffer and I have to remind myself that, in the end, this is for her good.

So when we aren't busy doing hospital stuff, we try and make her time as tolerable as possible.  We dress up like a princess, ride in a car that she has attached herself to, have endless tea parties, and play in the child life room.  Her smiles are what make all of this still bearable.

One thing that I am incredibly thankful for is that she really does have moments, even hours some days, when she looks pretty good.  She plays, laughs, makes demands, and bosses everyone around just like home.  I realize that it could be a lot worse and she could be laying in a bed all day unresponsive.  So I am thankful.

Our big prayers are for the drainage to clear up, for her to get off of her meds, and for her circulatory system to function like it is supposed to.  You can also pray for her mental health.  I fear how traumatized she will be from all of this.  Please pray she forgets and heals emotionally too.

Thank you for every prayer, comment, message, visit, and for just loving our girl.