Fontan Day 8: Post Op Day 5

2:00 Mary Clare is resting right now and Mel just left to go home for a few days, so I’m updating early today.  We’ve had a great day so far.  We were encouraged to get Mary Clare up and moving.  It helps get the fluid out of her chest and into her two bubbling boxes that go with her everywhere. All of the fluid coming off of her chest is closely monitored.  One box for her right tube and one box for her left tube.  Her fluid output increased yesterday and it still up today, but that’s to be expected.  Her numbers should go up and down, we just hope the trend is on a downward slope for the most part.  We’ll get there.  It is a gorgeous day in Charleston and very warm. It was great to get out of the hospital and enjoy the sun.  It’s amazing how uplifting a stroll in the “real world” can be.  We even sat outside at a little cafe on the MUSC campus and had a quick lunch.  Mary Clare sat in her wagon in the sunlight with her wireless monitor and boxes.

Mary Clare still has pretty bad back pain, but really only complains of it when we have to move her.  She looks like a little old lady when I have to pick her up.  She keeps her back stiff and holds on to my neck.  It’s quite an ordeal to get anywhere, even across the room, but it’s necessary and certainly worth it.  She still refuses to go to the potty, but we are working on ways to help get that under control.  We had a meeting with her neuro team today and had a few questions answered regarding her epilepsy.  They feel she has a genetic predisposition to have seizures, which means she would have had them with our without the heart condition.  They know this because her seizures are generalized; her whole brain is involved, not just one area of the brain.   Her neuro team will is watching her closely and will probably do another EEG before we leave.  Mel and I feel that if her seizures are as few and far between as they have been at home we’ll continue to just monitor her and not go forward with the anti-seizure meds. We love her nuero docs, who aren’t pushing the meds, so we feel good about this decision.  It is our understanding that the combination of the stress/trauma her little body has just gone through plus her predisposition to have seizures just raised her threshold to have seizures, which caused the increase in seizure-type activity.   (Much like a Febrile seizure, when a child has fever.)  We know she is prone to seizures, we just have to know how to react when she has one and just realize that sometimes she may be more likely to have them than other times.

She loves the underwater sea theme of the hospital.  One of her favorite things to do is go to the first floor and see the saltwater aquarium.  We’ve found Nemo and Dory in a tank with the Easter bunny!  She can sit and watch the tank forever.  Right now, we are in our room watching Finding Nemo and taking a rest from our outside time and hospital stroll.  The Children’s Atrium opened at 2:00, so we’ll soon head down there for another try today.  As always, we have met amazing families and babies who are defying the odds and are fighting with everything they have to survive.  It is truly humbling to see.  We live such an amazing life and have an amazing little girl. We are so fortunate to have so many friends and family caring for us and praying for her everyday.  God has certainly blessed us in so very many ways.

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