Just Chugging Along

It was so nice to be able to visit Nolan and see some definite progress on his part.  While he was using an NG tube for feeds instead of bottle feeding, he eventually began breathing completely on his own, and the number of meds he was on was less and less.  Soon we could hold him with the only thing being attached were his monitors.  It occurred to me that this was the first time since NICU back in December that I had seen him tube-free.

The CVICU staff continued to be awesome: they would hold him during the day, and oftentimes I’d come in to find his nurse sitting in the recliner just holding him and talking to him.  It was pretty special: I can’t continue to say enough about how great that staff is.  They even had a mobile brought up to his room so he can enjoy the sights and sounds, and they brought up a bouncy seat for him too.  It was like our son was moving from critical life to more normal life.

Eventually we began to try to have discussions with the staff about his possible discharge.  Namely we wanted to know if they would discharge us right from the CVICU.  We were told, though, that kids typically go to Progressive Care and are discharged from that floor.  While it was nice to have the going-home conversation, it was kinda sad to know we’ve one day leave the CVICU and be under someone else’s care for awhile.  Definitely bittersweet. 

In the meantime, though, I kept coming in to see him and I would hold him (unless he was asleep or cranky) and we would talk about all sorts of stuff.  And I never stopped calling him my hero…


About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on November 29, 2013, in CVICU and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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