Hold Up, Back Again

We came home from the hospital with Nolan with quite a bit more freedom: we didn’t need to weigh him or take his sats daily, though we would still keep up with it from time to time.  As always, we looked out for the other warning signs: labored breathing, any illness, etc.  We did notice that Nolan was incredibly fussy when we got him home, and we know to attribute that to the post-Glenn headache, aka “Glenn Head.”  That part definitely sucked: he was really irritable and we tried so very hard to make him comfortable. 

As our first week home started to wind down, we noticed that Nolan was even much more fussy than usual.  My wife decided to take his sats and noticed they were in the mid-70’s…which was his post-Norwood number.  After the Glenn he was supposed to be in the mid-80’s.  We kept an eye on it, only to see it trending downwards some more til it was in the low 70’s.  Finally my wife decided to go with her gut instinct and call the cardiologist.  She was told that they were extremely busy and to go take Nolan to our pediatrician instead.  My wife refused to accept that, knowing that the pediatrician was just going to freak out and call the cardiologist anyway.  She basically told them, “I’m leaving now and I will wait til I see someone.”  I left work too and headed down that way to meet up with her.  I gave my wife tremendous credit for going with her instincts on this one, since my first thought was just to observe him a little longer.  We finally got seen by a cardiologist, who took a listen to Nolan and said he thought Nolan might have some fluid on his lungs that built up after surgery and that he’d get an ultrasound just to look at the heart function, just in case.  GREAT.

So off we went to the ultrasound room, where we both worked to keep Nolan calm, which was becoming a near-Herculean effort with his feeling crummy AND the Glenn Head.  The doctor came in and noted that the heart function was perfect, there was no problem with the Glenn procedure, but that even in the ultrasound he could see some fluid on the lungs.  SOOOOOOO unfortunately, Nolan had to be admitted to Levine Children’s Hospital…a whole week after we came home from the Glenn Procedure.  How frustrating.  I mean we came home absolutely elated with his progress and now this.  Hopefully the stay would be long.

We were wrong.

Nolan underwent a chest x-ray to see the extent of the fluid buildup and then was put on some diuretics so he could basically pee off all that excess fluid.  He’d gone through it before post-Norwood but that was an immensely different story than now.  Nolan was placed under what’s called “Droplet Precautions”…which basically had everyone coming into the room donning a mask and gown, just in case Nolan’s fluid issue was due to a communicable illness (it wasn’t, FYI). 

So the days became long and dull.  We sat and waited and basically Nolan would pee like a full camel.  With the time I took off from work for the Glenn Procedure, I didn’t have much to take off this time, so I had to do my old work-home-hospital shuttle.  As the fluid came off, Nolan started getting back to his normal self: back to kicking his feet when he was happy, so that made me happy. 

In a funny-when-I-look-back-on-it moment, our good friend “Dr. Doom” was on call during one of the days I was there, and she came in for her daily rounds.  As I saw her in the outside room gowning up, I was like “Oh God, here we go again.”  I have to admit I was wrong.  She came in friendly as ever and talked ever so sweetly to Nolan.  At one point Nolan reached out and grabbed her hand and she played a little bit with him and even leaned down super close to talk sweetly to him.  MIND.  BLOWN.  So yeah, I guess she wasn’t so much Dr. Doom anymore.  It was like a different person…this makes 2 times in a row she has been kind to us and Nolan, and she was helpful and even made sure I had all my questions answered.  It made me feel bad for all the stank I was emoting towards her. 

Anyhow, one day in Progressive Care turned into two, which turned into one full week before we finally brought Nolan home.  How’s that for ironic?  This fluid-on-the-lungs thing kept him in the hospital longer than the Glenn Procedure did.  Sheesh.

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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 January 28, 2014, in Progressive Care and tagged , , , , . Bookmark the permalink. Leave a comment.

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