Super quick update...
Last week, Connor was switched from 22-calorie formula to 24-calorie formula (Special Care). He'd been on this formula once before, prior to his last infection. Back then he started having super frequent and runny stools, which they attributed to his amoxicillin. Then he got sick, and once better, they started him up on the 22-cal formula (NeoSure). Early last week, his weight was beginning to fluctuate, so one of the neos decided to put him back on the 24-cal formula. And... he started dumping, again. Of course we brought this to everyone's attention, every time we changed his diaper it was mentioned to either his nurse or a doctor. We were told he just needed some time to adjust to the higher calorie formula and all would be well.
On Thursday night, after losing 7 ounces within 24 hours, we knew our dreams of a Good Friday homecoming were dashed. Connor felt lighter to us, his face was more gaunt, and his eyes were bulging a bit. This rapid weight loss greatly concerned the neo on duty, so Connor's electrolyte levels were checked, and sure enough - way off - and he was extremely dehydrated! Replacement fluids were started. After a lengthy conversation with his doctor, he agreed with us that the 24-cal formula was no good for Connor, and he was switched back to the 22-cal formula. (Moving forward, any adjustments to Connor's menu will be determined by his pediatrician and his GI doc.)
This latest curveball has been frustrating as all get out... not only because we had our hopes up for the Good Friday discharge, but we also realized that had his formula not been changed, he would have come home on Friday. We're so tired of celebrating his first holidays in the hospital.
The good news is that Connor's gained 6 oz. back since Thursday night. (Currently at 8 lbs., 5 oz.) He's still on fluids, until his sodium levels are back in check. He's eating like a champ, burping well, spitting up a bit, and his stools are normalizing. He will need to come off the fluids sometime tomorrow and gain weight tomorrow night to be ready for his "planned" discharge on MONDAY.
Luckily for us, Connor's had the A-Team of his primary nurses assigned to him now and through the weekend. It helps so much when the person taking care of him knows his cues, understands his parents, and seems to genuinely care about him.
Connor has follow-up appointments like you wouldn't believe (a few more specialists have been added since my last post), and I must admit, I'm feeling very overwhelmed. He has 9 different prescriptions, with a dose of something due every 2 hours - except for at 6pm and 4am. (Yes, Mom, we will be using timers.) We want him home so desperately, and yet I feel I will have no time to get everything medical-related properly organized. We're so ready to be his full-time caregivers... we've been ready for months. It's just all of this extra medical stuff that makes me want to find a padded room.
I know we can do this... mostly because we have to... but I'm feeling a little paralyzed at the moment.
(So I'm using my free time to write a blog post??)