YOU Have a Say in Your Child’s Care



What a day.  This was the same day that I got to spend doing fun train stuff with Hudson.  It was also the same day Grant came home.  In addition to that awesome stuff, though, it was a day something wack happened.  See, up until this point, we became pretty food mainstays at NICU.  The nurses and staff knew us and we were there a ton.  In fact, we were part of the process: when the time came, the nurses would let us help by taking the twins’ temps and changing their diapers.  Easy, but it was a great way to stay involved and have hands-on time with the boys.  And even if one of the boys were to poop when it was not scheduled diaper time, they would tell us it was ok to change it whenever we wanted.  Today, though, this was different.

On the way back from my day with Hudson, my wife called to say Grant would be discharged, but she was also very emotional as she told me about this really rude nurse who wouldn’t let her do anything with Nolan.  At one point my wife heard him poop and when she went to change him, the nurse yelled at her and said he wasn’t scheduled to be changed yet and it didn’t matter if he pooped or not.  Well as I soon as I heard that, I was PISSED.  Like that bear up there (you’ll see him again later).  One thing I DO know, is that working for the same healthcare provider as the hospital meant that patient complaints are taken very seriously.  And if you remember from a previous post, the NICU staff provided me with a handy-dandy list of important phone numbers…one of which was the Nurse Manager.  So I called that number and calmly explained the situation.  Adding with rather sharp emphasis that, “I do not appreciate anyone allowing my son to sit in his own waste for any length of time.”  The nurse manager apologized profusely and said she’d handle the situation and would like to meet with me the next time I was in.  I told her I was on the way.

When I got to the hospital, she was there to meet me outside of the NICU doors after I did my 2-minute hand-wash and gowning.  I told her before we talked I just wanted to go in and say hi to my wife and twins.  I went in and noticed Nolan’s numbers on his monitor were a little low.  So I leaned down and said “Hey buddy, I’m here and i love you.  I’ll be back, ok?”  and his numbers went up.  Told you…we have a bond.  I did the same for Grant then went off to meet with the Nurse Manager in her office.  She was very cordial and again apologized for any problems.  She said she spoke with my wife and the nurse and that the main issue centered around Nolan having some lower oxygen saturations that day, and they didn’t want him too worked up through too much human contact.  She also said the nurse in particular had many, MANY years of experience and only wants the best.  In the best way I possibly could, I told her I didn’t care if the hospital was built around that nurse, she needs to treat people better…like human beings, with good, clear communication.  If she just SAID something, it wouldn’t be such an issue…instead she had to be all stank about it, which caused this hullaballoo in the first place.  And I told the nurse manager, “I appreciate your expertise, and I will keep contact with him to a minimum…but if I want to hold his hand or his foot, I’m gonna hold his hand.  And you will not stop me.  That’s MY son.”  To be honest, I didn’t feel completely satisfied with the meeting, but it was more important to me to voice my concerns and be on with my life; particularly spending time with the twins and getting Grant ready to come home.

Unfortunately, people talk.  That evening, after Grant was settled in at home, I went back to the NICU for a few hours to hang out with Nolan.  I sat real close to him, held his hand for a little while, but mostly just sat quietly, prayed, or talked to him.  When I got there, I asked to see his nurse for an update.  At this time of day, the shifts had changed, so it was a new nurse, thank GOD.  She came up and I asked how he was doing, and after her report I asked if it was ok for me to just scoot up close to him and talk to him quietly.  Her response blew my mind.  She said something like, “Oh yeah, I heard about that.  You know, like, you’re the parent, if you want to do something, you can go ahead and do it, I won’t stop you.”  That was frustrating.  So apparently word got out and suddenly I was the Ogre Parent.  Great.  I tried to assure her that it was merely a simple question and I just wanted to do what was best for him, but I got the same kind of response.  Ok, whatever.

Listen, sure i was labeled as a bad guy by a small handful of people…but it was worth it.  I put those bustas on notice that I didn’t want them treating my family like just another number.  We got incredible care at the NICU, so don’t think a few knuckleheads ruined it for us.  But it became clear to me that things aren’t always communicated well, nor do they happen in a manner you like or feel is fair.  SAY SOMETHING!  It is your right.  As a parent, you are your child’s best advocate.  Trust your gut and let someone know how you feel.  Sure, there’s the chance you become the bad guy, but most of the time they just want to work hard to make it right…and they should.  Please, for the sake of your kids, SPEAK UP!

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 1, 2013, in NICU and tagged , , , , , , , , , . Bookmark the permalink. 1 Comment.

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