They Tried To Make Us Go To Rehab, and We Said…Whatever it Takes

So this was new territory for us…the Rehab unit.  While Nolan’s weakness was unexpected for us, we are always willing to do whatever it took to make him better.  So to the 4th floor we went.  We met with Dr. Tsai, who was over that unit and he was a very kind, compassionate guy…we really liked him.  For some weird reason we technically had to be discharged from the hospital and re-admitted to the Rehab floor, even though we never once left the hospital.  But oh well.

One thing became clear right away: we were outside the friendly confines of our usual CVICU and Progressive Care units, where caring for kids with CHDs is right in their wheelhouse.  Here?  Not so much, but that’s not a bad thing.  We just had to do a lot of explaining and re-explaining, and – of course – resetting the blasted pulse ox machine so it wasn’t beeping every 45 seconds.  A slew of therapists came through to do initial evals on Nolan and we learned that everyday except Sunday he would have up to 3 hours of therapy a day and they would come in every afternoon to post the next day’s schedule on a calendar in our room, which was pretty cool.  It would have the therapy, the therapist’s name, their picture, and length of time.  They even scheduled nap/rest times.  I actually liked knowing who was coming and when, as opposed to other floors when people just show up (you know how that is…come on, people).  Otherwise the staff worked pretty well with us as they got used to Nolan and let us kinda control how often they’d come in and bug him and even let us give most of the meds if we were able.  That really ensured a more restful night…for him, not for us: we slept on an awful, skin-eating vinyl couch, but whatever.

On Nolan’s second day they jumped right into things like helping him stand and use his arms for play:

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It was a rough go at first: he was still very weak and still on oxygen so things were slow-moving and he got tired easily.  But this is Nolan we’re talking about, so he’s a trooper!  We enjoyed walks around the hospital in his wagon and even fun time in his room…one of his favorites was playing Bingo:

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The combo of letters and numbers was right up his alley.  We’d use the TV in the room to tune into the radio station in the lobby and he would call and say “BINGO!” whenever he’d make a line.  Then two of the interns would come up dressed like Disney characters and bring him a prize.  He LOVED it.

So on and on it went: Nolan continued to work really hard and began making some good progress.  He even got some visits from the therapy dogs:

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We got to meet some families there in that unit who had been there for some time and would be there for some time.  Their kids were going through some real difficulties and my heart went out to them.  We knew Nolan would regain his strength and for that I’m thankful.  Nolan started getting more energy (and got pushier and bossier, as is his custom) and eventually we got to this point:

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That is a post-Fontan, little beast, completely walking on his own with NO oxygen! YEAAAAAAAAAH BOY!

So the next step, then, was to get the heck outta this place and get back home!  WOOHOO!  And then finally…33 days after we went in for the Fontan…Super Nolan walked back through those hospital doors and we made our way back home, where we can focus on an amazing future for this little nugget:

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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 September 27, 2016, in Fontan and tagged , , , , , . Bookmark the permalink. Leave a comment.

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