Pretty much since his first surgery, Nolan has always been on a medication of some type. In a previous post I wrote that Nolan’s cardiologist instructed us to take him off aspirin, so the only meds he was on was for reflux and bowel motility. Nolan’s reflux was bad…oh so bad. I mean this kid was Niagara Falls, he’d spit up everyone and it would sometimes soak through his car seat. Nasty. I think we did laundry daily and 99% of it was spit rags and towels and blankets. Heck, we couldn’t go anywhere without Nolan spitting up after being in the car for about 3 minutes. This didn’t help at all with his weight gain either. It seemed like he was growing very slowly. In fact, it seemed like he was at 16 pounds forever.
I have no idea what happened, though, but one day Nolan decided he was done with spitting up. We kept giving him the meds, but one day I was like “Hey…when was the last time he spit up?” Days turned into a week…so we tried to back off the reflux meds. Still no spitting up. What?! A week turned into a month. Still no spit ups. You read that? NO MORE SPIT UPS!
I still have no idea what brought on this lack of reflux, but thank GOD! Next up was keeping an eye on the next med. Nolan was pooping just fine. In fact, his farts could kill a gorilla. That kid is NASTY. So we backed off the other med…and he was fine.
Yes! So recently my wife took Nolan to a G.I. appointment and mentioned it to the G.I. Doctor and he said it was fine with him, especially if Nolan’s bowel motility is fine.
So in January 2014…NOLAN WAS OFFICIALLY OFF MEDS COMPLETELY!!!
Nolan was sent home from the hospital with quite a bit of meds including aspirin, lasix, reflux meds, something for his tummy, and two pain meds: Ativan and Methodone. We were only instructed to give those meds for a day or two before ceasing them entirely. And that’s where the ab-so-lute madness began. What I didn’t know was that apparently weaning off those meds is like putting your whole body through pain. And boy did Nolan show it. For like 2 days Nolan did nothing but writhe and scream. Picking him up didn’t help…putting him down didn’t help…rocking him didn’t help…putting him in his swing didn’t help. He would cry and cry and cry, and wouldn’t sleep…and neither did we.
I honestly thought I would lose it…I mean we were getting no sleep, all while trying to learn to incorporate Nolan’s routine into our already crazy routine so we can come up with a brand new routine. It was exhausting and we both felt like we were at our wit’s end. But just as quickly as the screaming came on, it went away, just like that. But dude I gotta tell you, that was the WORST couple days. I look back on it and just shake my head, I was so scared that everyday would be like that (hint, it wasn’t). Being a heart parent is definitely hard work: you don’t know what curveballs come your way, and you have to learn to handle them often with a severe lack of sleep.
So let’s hear from the other heart parents out there: how did you adjust to your baby being home after discharge?