The CHAMP Program

rocky2-champ-feature

I hope everyone had a great Christmas and New Year!  Thanks for your patience while I took some time to spend with my fam.  Now back to it:

While in Progressive Care with Nolan, we were introduced to one of the cardiology Nurse Practitioners, who told us about a program called CHAMP.  This stands for Complex Congenital Heart At Home Monitoring Program, and she told us that this was a program we would use to “ensure he lives until his next surgery.”  WHOA.  That scared me because I really didn’t want to think about the possibility of something happening to my boy at home, but I knew it was something we had to do for him.  What I eventually learned in the long run is that there is a percentage of kids who will survive the Norwood Procedure, but will not make it to the 2nd procedure (the Glenn).  The CHAMP program is an effort to lower that number and get HLHS kids to that 2nd surgery.  I’m all for it!

The gist of the program is that eventually you will go home from the hospital with your child…there will be no doctors or nurses around…there will be no one checking his vitals…there’s just you, the parents.  So the program sends you home with an oxygen saturation reader and a scale.  Everyday you are to take the baby’s sats and weigh him and log both numbers in a binder they give you.  Not only will that allow you to track and show weight gain, it allows you to see any trends that are happening, whether positive or negative.  For example, you will be able to see – over the course of several days – whether oxygen saturation has been trending downward and/or weight gain has been stagnant.  You can then call the cardiologist and say, “I’ve noticed that on this day he was at this and today he’s at this.”  It gives a much better picture to your medical team as opposed to you calling out of the blue like “OMG OMG OMG he’s breathing hard, AHHHHH!”  A better picture gives doctors better options: they can choose to have you come in, admit the child back to the hospital for observation, or just have you wait and do more observation at home.  But it must be consistent: everyday at the same time. 

So part of what we had to do at the hospital was learn how to use the scale to properly weigh Nolan and how to use his sat reader.  It was relatively easy, we just had to be diligent with it.  I think, far and away, the worst part of the CHAMP binder is the “Red Page of Doom,” as I call it.  This is a page that gives you all the warnings, the “if you see this, call us IMMEDIATELY” kind of things.  And it’s quite a list.  If he has labored breathing, if he turns blue, if his sats drop below 75, if he doesn’t gain weight, if he’s sweaty, if he’s clammy, and on and on and on.  It’s enough to make you paranoid, honestly, especially when you turn on his sat reader and it starts out at like 72 before slowly and eventually climbing up to 76.  It’s like 45 seconds of terror.  A bit  of a spoiler alert, though: we learned, after a few freak-outs, that sat readers aren’t perfect machines.  You need to use a combination of the machine and your two eyes.  Sometimes the sats can read low, but if you look at the child, he isn’t in any kind of respiratory distress.  It took a few phone calls to the doctor to learn that lesson, so hopefully I’ll save you a freak out or two!

Anyway, while the CHAMP Program was a big responsibility, it was a necessary step to Nolan’s survival AND a necessary step closer to getting out of the Hospital.

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on January 8, 2014, in Care at Home, Progressive Care and tagged , , , , , , , . Bookmark the permalink. 1 Comment.

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