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When In-Home Care Isn’t Enough

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Ever been in the right place at the right time?  In a previous post I mentioned that my wife and I were pretty disappointed with our in-home speech therapy and physical therapy.  It was nice that they were coming to us, but after months, we weren’t seeing any results.  The biggest problem was the speech therapist: she was often rude and condescending to my wife (a HUGE no-no) and once Nolan spit up all over her during a therapy session, she pretty much gave up on him.  I don’t play that.  One day I was walking out to our mailbox, and I’m sure my mind was on 5 million other things that given moment.  I mindlessly grabbed the mail and saw just a bunch of junk mail: you know the kind – cleaning services, sell me your house, vote for me, etc. etc…all useless…or so I thought.  The last card/ad in the stack was one for a new place that opened very close to our house called Pediatric Boulevard:

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I read the card, then re-read it.  It said they provide physical therapy, occupational therapy, and…SWALLOW THERAPY.  It said it right there in black and white.  It was like a God-send.  I remember standing there on my front porch and hoping this would be the next step we needed to make.  Excitedly I walked into the house and showed it to my wife.  We looked them up and saw they took our insurance…all we would need is a referral.  That was easy: at the ceremony for the HEARTest Yard (wrote about it yesterday), my wife and I cornered one of Nolan’s Nurse Practitioners and laid out our case for trying this new place.  They told us they’ve worked with heart babies before, so we felt like giving it a shot…what did we have to lose?  The NP said to email her the info and she would make the referral…we did, and she did. 

Nolan currently attends physical therapy twice a week and speech therapy twice a week at Pediatric Boulevard.  Yes, we have to drive there, but it isn’t far at all.  They’ve shown to be much more aggressive with his therapies in order to push him towards results.  No more of this rubbing his face crap…they actually tried to FEED him.  What a concept!

You know I can’t say it enough: as a heart parent, you are responsible for the quality of your child’s care…don’t just leave it up to the doctors: they’re very busy.  You know your little warrior, so be their advocate and find the best care for them!

 

Living in Grand Central

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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.