Blog Archives

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!

Oxygen Saturation



If you have a CHD baby, whether it’s HLHS or something else, you’re going to become really, REALLY familiar with an Oxygen Saturation monitor, aka O2 Sats, aka Sats, aka Pulse Ox.  Oxygen saturation is a measure of how much oxygen the blood is carrying.  If you hooked up a healthy adult or child to a sat reader, it will show the oxygen saturation as at or very near 100%.  With Hypoplastic Left Heart Syndrome, this will not be the case.  When Nolan was in NICU, I didn’t know anything about all the numbers on the monitor he was hooked up to.  The nurse told me all about it: blood pressure, heart rate, and oxygen saturation.  Sat rates are really important for heart babies, obviously: if they get too low, their breathing gets labored and their color can start to change.  I remember in NICU that Nolan’s monitor was set to go off once his sats were below 75.  And man did that thing go off…it’s an all-too-familiar sound to heart parents: boong…boong…boong…boong….BINGBINGBINGBING.  And then you freak, and maybe the nurses come a little quicker, and typically everything is fine.  The sat monitor used to make me nuts until one of Nolan’s doctors finally told me that the sat reader isn’t always an exact science: it may show low sats but that doesn’t always mean low sats: you have to look at his breathing and color.  If it’s reading his sats at 60% but he’s breathing normally and his color is good, then it’s ok.  Just give it a minute and we’ll see.  Sometimes, though, it is very serious.

So here’s another reason why reading sats is important: IT SAVES LIVES.  How?  It can really catch CHDs in undiagnosed babies before they leave the hospital.  Imagine this: not every family finds out their baby has a CHD during the pregnancy phase.  That’s terrifying.  Even worse, some families never find out their child has a CHD and the baby dies shortly after birth or in one of those terrible sports-related deaths you read about in the paper.  That’s even worse.  Not every hospital is equipped with a NICU, much less a staff that can adequately handle a CHD.  Many kids are transported to hospitals hours away…so we’re lucky to have one of the best right here.  Even so, a great way to find out about a potential CHD and work on getting help is through pulse ox screening for EVERY baby.  This is a $5 test that takes like 5 minutes.  That’s it.  The crazy thing is, not every state requires mandatory pulse ox screening for every baby born prior to discharge.  That’s changing, though, and it’s AWESOME.  Think about how many lives can be saved with mandatory pulse ox screening across the country?  I can’t imagine what it would be like to find out just after birth about a CHD, but I think it’s worse to never know and then lose your loved one because of it.

So how does mandatory pulse ox screening become a reality?  With you!  Go to this site: and see if your state has passed a pulse ox screening law.  If not, you can also find out how to contact your local lawmakers.  Be serious about this: contact them.  Saving these lives starts with YOU: so show that you care and do it.  This law passed in NC and I was thrilled thanks to many heart parents who are fighting for their babies and those who are to come.