Our lil' Bean is having drug withdrawals. The Bean went from being on narcotic painkillers, to methadone and addevan (sp?) to ween her off the narcotics. She was also switched from getting those through the IV, to orally (through the G-Tube), and in doing so, the dosage changes. Well, it's supposed to. Seems that the Dr. generating the orders, seemed to fail to make the adjustment on the dosage changing from the IV to the G-Tube, I suppose the pharmacist filling the order and signing off on that change, failed to make that connection too. We only figured this out when the Bean got severely agitated and inconsolable, which means burning a ton of calories - which defeats a lot of progress!
The good news is that we're now out of PICU and onto 'the floor.' We're on an 'intermediate' level of care, mainly because we were requested to move there by our favorite nurse. However, the Bean's afternoon was anything but quiet. Andi Bean got to meet another cardiologist, whom got us up and out of the bed. Out of the room. Off 'the floor.' The three of us went down to Starbuck's. Andi Bean passed on her first java, after all, she'd been awake all morning already, but, the cardiologist was able to gather a lot of information about our Bean, and give a synopsis on our exit strategy. She also gave us a glimpse into our immediate future. We're going to work on nippling a bottle asap. Audiology is supposed to come by at some point. We've got to figure out her med schedule and start the weening process, this was all said well before her next two meltdowns, the last one indicating that something (dosage) just wasn't right. We've got a lot of recovery and learning on her part, and I've got to get her up out of bed to help clear her lungs, ween her off the O2, and help stimulate her recovery further. Lastly, she indicated that there will be a few hiccups along the way. We've got to be extra careful about her post-op care. She said these next few months will be very important, because of her delicate health, we have to be very cognizant of her well-being. We've got to watch germs. If you're sick, don't come around me or my baby. If your kid has a runny nose, don't visit us. If your neighbor three doors down is coughing, stay away from us. Please respect that my Bean's immune system is weak due to her surgeries, meds and such - and just don't. There, it had to be said. Just cuz she's out of ICU, doesn't mean we're totally out of the woods. We've been through so much, please just don't even risk it, okay? I was reading Facebook posts earlier, and saw a few parents were mentioning that already back-to-school illnesses are spreading. I think that has made me hypersensitive about a statement the cardiologist said, but, with good reason. What you think isn't that big of a deal is a really big deal to someone that has spent the past 15 weeks in the hospital. Maybe I'm being a bit over dramatic, but, honestly, sit in my shoes for just one minute and then let's talk. Some incredible man just had my daughter's heart in his hand while he fixed it and made it work how it's supposed to work... think about it ... and cut me some slack. Colds and flu are tough on anyone, but especially tough on a baby coming back from major surgery. 'nough said. I do have some nasty urge in me to stick needles into anyone bringing my Bean harm... including those whom neglected to make the dosage conversion and thus upset the Bean. I never really got the line about 'you'll find you will do anything for your kid' type of statements, pre-Andi Bean, but, I get that one now more than ever and second it. She's like a really good cup of strong coffee. I've gotta have it, I'm addicted. There just isn't any hope for anyone coming between me and my Bean. Seriously.