When ns was a child my favorite Saturday morning display was urine Wee’s Playhouse. Yes, I stated it. That show was hilarious, and even moreso currently that I’m one adult. However that’s no what this article is around (per se). Do you psychic whenever that would execute the connect the dots bit?

Hilarious. The day before I moved down come NC, my finest friend and also I were hanging the end at mine grandmother’s house and also we found an old VHS tape of urine Wee’s Playhouse. As soon as he busted out through “Connect the dots, la la-la la-la” we shed it. In fact, any type of time someone mentions “connect the dots”, ns think of pee Wee. Give thanks to you America.

So what to be I obtaining at? In the civilization of love babies there are lots and lots of dots, depending upon your kid. Nolan has a entirety lot of dots in his life come connect: cardiology, G.I., physics therapy, decided therapy, cranio-facial, etc. The big problem I’m recognize is the these dots simply kinda float around there v nothing to affix them. Currently that Nolan is done through surgeries because that a couple of years, I’ve been reasoning a lot about what could make things better for Nolan and also other love babies. Here’s an example:

A mainly or for this reason ago, Nolan was having actually an absolute cow at home. He was fussy and didn’t sleep well. My first thought was the he can have an ear infection, so I called his pediatrician’s office in ~ 8am one morning because that a 9:30ish appointment. Because I had to walk to work, my wife took that in. Due to the fact that I dubbed that morning, that wasn’t may be to see his typical pediatrician, yet we figured that would certainly be ok. Certain enough, he had actually a double ear infection; however what occurred prior to the diagnosis is what acquired me thinking. So a nurse came in to check Nolan’s vitals (and no the typical nurse who sees him) and also my wife pointed out that he has HLHS. Her reply, “What’s that?” Yeah, that’s a problem. I’m sure doctors and also nurses have actually to attend to a lot of world assuming they know around every condition ever discovered, however c’mon son…he has actually a chart, why don’t you give it a look-through before going in to check out him? and that’s among the points that infuriates me as a love parent: when human being come in to view him and don’t stroked nerves to look over his info and I find myself saying the exact same thing oooover and oooover again. Well my mam then asked, “Aren’t girlfriend going to take his satellite reading?” come which she replied, “Well…I guess, if friend want.” UGH. Again:

As Nolan’s parent I am much more than happy to advocate for him and other love kids, i really am. But sometimes i feel prefer we as his parents are tasked through the sole obligation of attempting to coordinate his care. Each of his physicians and therapists carry out a an excellent job in their very own regard, however it’s favor they exist on their own separate islands…islands they can’t it seems to be ~ to endeavor away from, for this reason it’s up to me and Bekah to put Nolan ~ above our back and swimming island come island. So how do we connect those dots?

I think the prize lies v cardiology. Nolan’s heart condition will always be the best issue, and I for sure love his love team, they execute an remarkable job. This is not intended to be crucial of them, it’s simply a suggestion and also one that i think can advantage ALL heart kids in all heart programs: the heart teams need to take the an initial step in connecting the dots. Imagine when you’re around to leave the hospital after your child recovers from the Norwood Procedure: if your cardio team asked, “Who’s her child’s pediatrician? would it help if i talked with them and also offered to educate them around your child’s needs?” WHAAAAAT? the simply offers my boy the best shot at getting the ideal care. 

Let’s take it also further. Let’s to speak you’re traveling and also – God forbid – something wake up to your little one. You have the right to avoid the “Durr, what?” answers from a different treatment provider if perhaps your doctors listed you through a packet that laid out everything about your heart boy in a doctor-specific packet. That means you can say, “Here is what his medical professional says around his condition.” 

It would be great for G.I to save up through speech treatment or for G.I. To keep up v cardiology. And maybe that does happen to a small degree, however I think much more could be done.


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I recognize as a heart parent it’s annoying/exhausting once you see a new doctor and mention his sats room in the mid-80s and also they’re favor “OH my GOD!” It’s enough to treatment for a love baby and also the advocacy associated with it, however a little help in that department wouldn’t hurt. Everyone might stand come learn more and interact more.