Living in Grand Central


Upon being discharged from the hospital, we were told we’d be getting a wealth of help at home: nursing visits, physical therapy, and speech therapy.  Combined with the myriad doctor’s appointments that Nolan had, there was a ton going on and I’m amazed my wife kept up with it all.  She’s amazing.

So basically the nursing visits were incredibly simple: they wanted to be sure we knew how to draw and administer his meds, how to record his weight and sats, how to do his feeds, etc.  They only visited a few times because they figured out quickly that we had those things pretty much under control.  Once I commented that the nurse must see some pretty non-compliant families.  She said, “Oh you can’t imagine…”  It was nice to feel like we were doing something correctly, and after a few visits she stopped coming back because she wasn’t needed.  That was a bummer because we were hoping we’d get regular visits from a nurse that would help with his care…no dice. 

Physical therapy was there to help him with his arms and legs and prepping for sitting up, crawling, and eventually walking.  Nolan spent over a month laying still in a bed so he needed a lot of work.  Unfortunately I never got a chance to meet the physical therapist because I was always at work, but she tired to work on his wrist and tried to work with him on tummy time once it was OK’d by the cardiology team.  One big note: you won’t be able to lift your heart baby under his arms post-surgery for several weeks due to the chest closure.  This is serious stuff, just scoop him up until you get the ok!

Finally we had a speech therapist come to help Nolan learn to eat by mouth.  Before we left the hospital we were told that in-home speech therapists were very few and far between so we would have to stay on them to get a therapist out to our house, particularly in the county we live in.  Luckily we got someone to come out rather quickly.  Unfortunately, though, this speech therapist SUCKED.  She was about as friendly as a potted plant and always seemed annoyed she was working with a baby.  I remember one day she said she had to take his vitals and I said, “The nurse just left and took his vitals, we wrote them down and you can use those,” and she replied, “Oh good…I don’t do well taking kids’ vitals.” THEN WHY ARE YOU DOING THIS JOB?!!!!  Ugh.  She was often rude and short with my wife, and I don’t play that.  And she spent an insane amount of time just doing these face-touching exercises with Nolan: rubbing his cheek over and over and over and over….and over and over.  Eventually after forever she tried to actually put something in Nolan’s mouth…and due to his really bad reflux, he spit up all over her.  HA HA.  From then, though, she seemed really annoyed and distant…and we were getting nowhere.  It was really frustrating. 

This was our routine, though…I wished Nolan would just come home from the hospital and in a couple weeks be a normal baby.  But this was a new normal: it was going to be a long, hard marathon.  And like I mentioned many times already: it was up to us to be sure he got the best care possible.

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 January 15, 2014, in Care at Home and tagged , , , , , , . Bookmark the permalink. Leave a comment.

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