On Saturday, Frankie was moved out of the ICU and onto the medical floor. We had originally planned to transfer Friday, but a cautious night nurse raised concerns that he might be coming down with something. A full septic workup was done, but no signs of sepsis were found. When I visited him Friday, he was all smiles—happy as could be.
He still looked well Saturday morning, but I missed (and the NICU missed) something important: a jump in his CRP levels from 0.5 to 1.5 in just 24 hours. Had I caught that, I would’ve dug my heels in to keep him in the ICU. But we transferred Saturday afternoon, and by Sunday morning it was clear something was wrong. Frankie’s smile faded, his heart rate spiked with pain, and he was too uncomfortable to play or even be touched.
Lab work confirmed it: his CRP had jumped to 7 and then 11. Blood cultures came back positive for staph epidermidis, both from his central line and a peripheral draw—meaning it had entered his bloodstream. We got antibiotics started quickly, and today he’s doing better. Not quite back to his usual cheery self, but his heart rate has normalized and he’s playing again.
Unfortunately, both lumens of his PICC line have clotted off. He’s endured multiple pokes for peripheral IVs, but those can’t handle his thick nutrition, so he’s currently on sugar water until the infection clears and we can place a new line—hopefully on Friday.
The transition to the med floor has been tough. I’ve cried over things that might seem small. In the NICU, I could just grab what I needed—supplies, wipes, syringes—without asking. Here, I have to request everything. It makes me feel less capable of caring for him the way I know how. The communication is different too. I don’t get daily team updates or phone calls, and the nurses don’t always tell me the details I find important. It’ll take time for us all to adjust.
There’s still no clear discharge date. I’ve heard guesses—two weeks, maybe four—but this infection likely pushes things back. Thankfully, we had help from cousins over the weekend to get the house ready. The basement is finished so Henry has a fun space to play while Frankie stays on the main floor with room for his equipment and nurses.
We’re approved for 14 hours a day of nursing but are still fighting for 24-hour care through insurance. I’m in back-and-forth limbo with hospital case managers trying to get Frankie’s home care supplies in order—each “bundle” coming from a different vendor. I’ve asked for supply lists at least a half dozen times. And of course, we can’t finalize nursing until we have a discharge date.
Somewhere in the chaos, I also need to trade in my trusty Rav4 for a van—a bittersweet task. That SUV has served me well for six years. I’ll miss it, but the new van will make life easier for us all.
So yes, this mama is stressed. But also grateful. Grateful that Frankie is handling this infection as well as he is. Grateful that we’re inching closer to discharge, even with delays. Grateful that Henry is thriving—pulling to stand, giggling nonstop, growing like a weed.
Still, the healthcare system—with all its red tape and good intentions—can be exhausting. Even with so many compassionate and skilled individuals, the process often feels like an uphill climb.
Please keep us in your prayers. Pray for Frankie to adjust well and make it home safely, for the twins to reconnect and flourish together, and for this mama to stay strong through these final hurdles. This chapter is full of unknowns, and that can be both overwhelming and disheartening.
Thank you, as always, for your love and support.
— Amanda
