First Attempt at Chest Closure

I believe we were at home, preparing to head down to the hospital, when we got a call.  We always knew when the hospital was calling because it shows up as something crazy like 1-9380993908230983098 on our phones.  Anyways, it was Nolan’s nurse, who told us that Dr. Maxey wanted to attempt to close Nolan’s chest and would need our authorization.  We gave it and quickly hit the road for the hospital.  The cool thing about Nolan’s room in the CVICU was that it could also serve as an operating room, so that for procedures like this, he doesn’t have to be moved and unhooked from anything.  We checked in at the nurses station, then waited in the waiting room.  We were told it would take like 40 minutes or so, but I we were waiting well over an hour.  Finally Dr. Maxey came out…when I saw him, I was hopeful.  He sat down across from us and said that he attempted the chest closure, but that it didn’t agree with Nolan and he had problems with his pressures, so they had to open the chest back up.  Talk about deflating.  He said he would wait about 10 days or so, to let him get more fluid off.  We went back to see Nolan and the room was busy with nurses.  One thing of note was that Nolan had a bunch of ice bags around him…because he actually coded for a brief moment during the closure.  But apparently God didn’t want him yet and everything turned out to be all good: his brain function was fine and his heart function was good too.  We just had to continue to wait.

This day kinda shook me because of how real this situation continued to be.  Nolan was so fragile in his condition and it could change any minute.  I continued to try to hope that things were improving, but honestly everything looked like it just stayed the same.  The nurses re-assured me that things were ok and that this wasn’t totally unusual, so I tried to keep that in mind as I continued to shuttle back and forth between home and the hospital.  Sometimes it was hard to come home to a completely healthy twin after leaving a twin hooked up to so many machines for his survival.  It didn’t seem fair.  Other times, I was thankful for a healthy Grant and a healthy Hudson, who took my focus off the bad and put it on the good.

Being a heart dad is definitely a marathon, not a sprint.  And unlike a real marathon, I don’t really think there’s any way to prepare for it, not completely.  I mean you can read up about it and talk to other heard dads (and I hope you do!); but there’s no anticipating the emotion that comes with it until you’re in deep.  And fortunately, that’s where having connections helps…you’ll need people to fall back on.

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on November 10, 2013, in CVICU and tagged , , , , , , , , , . Bookmark the permalink. Leave a comment.

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