Post Op: Round 2

The problem with being an amateur Heart Mom is that I'm naive.

I think it's ok to plan a field trip two days after open heart surgery.  A major vacation in two weeks.  I expect nothing but smooth sails because that is what I'm used to.  Our family rarely gets sick.  Josie has had one ear infection, we easily dodge the flu.

Our colds don't hold us back, we push through a little nausea.

But this?  This isn't a low grade fever or a spot of rash.

It's his heart.

And we went in there and rearranged without asking permission.  Changed all his pressures and sewed him back up.

And that's a big deal.

I've been surprised by the emotional level that is happening post fontan.  I'm anxious about things I've never thought to be anxious about before.  Playing out of earshot, not finishing his breakfast.  It all carries a different meaning now.

only one picture today.  

after this we had labs and he proceeded to cry and scream during every other appointment.  fun stuff.

The past few days, Gabe hasn't been himself.

Not enough to really concern me, but enough for me to notice.  We hoped it was just a delayed recovery to the surgery, but prepared for it to be the fluid building back up.

They sent us home from our second post op appointment today, not because he is doing so spectacular, but because there weren't any beds.  At our first post op appointment, the X-ray showed some fluid on the right side.  Today's X-ray was much fuzzier, meaning more fluid.  There is a small possibility the blur was from him not holding still since he was not at all happy at any of his appointments today.  The doctor said compared to Monday though, it appears his chest cavity is slowly filling up with fluid.

The hope is that it will keep the adjective "slowly" over the weekend.  If not, he will have a hard time breathing.  Basically it would fell like drowning.  We have to watch him closely and head to the ER with any signs of respiratory distress.

The doctor assured me that would be unlikely.  His stats were in the high 90's and he was buzzing all around the office playing catch with the nurses.

We will keep him on the 3 diuretics he is on with a tiny shimmer of hope that the fluid levels will start to taper off by Monday.  The were very clear that this is unlikely to happen though.  We will go back early Monday morning ready to be admitted for a few days.

If we are admitted, Gabe will get a new chest tube put in to drain the fluid.  They will do it in the cath lab and he will be sedated for it.  The actual procedure shouldn't take more than an hour or two and from there we will get a room for as long as needed.  Hopefully we can be home by Wednesday or Thursday.

All this is unexpected and new to me.

I have no idea what I'm supposed to feel or how to process or exactly how to conduct myself.  I know that I am exhausted and frazzled.  I'm trying not to think about pushing another week of school for Josie into the Summer months, trying to remember I have an awesome village around to help care for her while I'm not home.  So, so, so ready to be on the other side of this.

But let's end this on a happy note.

Even with the fluid, Gabe's O2 levels were 96.  He hasn't complained about pain at all.  We are lucky that Andrew is off today and tomorrow so we can get some family time in before we get admitted again.  I'm even getting squeezed in at the salon to cover up all the grey hair this is giving me.

We will survive this and Gabe will be fine.  It's not the timeline we were hoping for, but life rarely falls into the ideal.

Here's to enjoying the weekend.