Some time ago I wrote a post about the CHAMP Program at Levine Children’s Hospital (read it here: https://hlhsdad.wordpress.com/2014/01/08/the-champ-program/). Long story short, the CHAMP Program was designed by the heart team as an effort to keep heart babies healthy and surviving during the period between the Norwood Procedure and the Glenn Procedure (aka the Interstage). From Feb 13, 2013 to August 7, 2013, we weighed Nolan everyday, read his pulse ox, and recorded it in a binder. After the Glenn Procedure was complete, we were told we could throw the binder away. Did we throw it away? Absolutely not, but it was a great feeling to know he was past this point and on to bigger things!
Well yesterday was a very exciting day as we got to bring Nolan and join in with 5 or 6 other families to celebrate our little heart warriors with a CHAMP Graduation ceremony at Levine Children’s Hospital!
The Ceremony was a lot of fun: we got to see all of our friends from the LCH staff, including Nolan’s absolute fav nurse:
And even Dr. Maxey, who did Nolan’s Glenn Procedure:
It really makes a heart daddy proud to hear everyone gush about how well your little one looks. It’s always great to get the opportunity to see everyone when it’s NOT for an appointment or, even worse, an admission of some sort. It was really good to meet other heart families as well: some who we’ve met before, some who we’ve been communicating with on Facebook, and some who have even read this blog (I was genuinely touched by that). I think it’s good to get heart families together like that so we can continue to encourage each other…and show of our little monsters too! Of course, another cool thing was having Greg Olsen in our class as well, since his son finished the CHAMP program just before Nolan did. I can’t say it enough, but it’s always really cool getting to chat with Greg: he takes the time to talk with everyone and be the best help possible. I know he leads an incredibly busy life (and man, did the Panthers have an awesome year or what?!), but he always takes the time to talk, and I always enjoy it:
Nolan also got some media love that day (check it out on his facebook page: facebook.com/SupportTeamNolan). He was loving all the attention, I know that’s for sure!
Overall it was an awesome time, and it was a great honor to meet all the other awesome families:
Most importantly, though, I’m really glad we all got to do it as a family:
So congrats to all the CHAMP Grads! Onward to bigger things! Get a job! Just kidding.
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.