I’ve been sitting with my fingers on the keyboard, trying to find the right words to start this post. Yesterday, we met once again with Frankie’s surgical and GI teams. After a month of emotional back-and-forth discussions about when to move forward with his next surgery, they’ve decided: we’re going home.
For now, the focus is on increasing Frankie’s enteral feeds. His team feels he no longer requires ICU-level care and is tentatively planning to transfer him to the medical floor next week. The plan is to spend about two weeks there, gradually increasing his feed volume and preparing for discharge.
The thought of finally bringing Frankie home fills me with joy and anticipation. It’s a moment we’ve dreamed about for so long. But as his medical team acknowledged, there isn’t a clearly structured plan for what this time at home will look like. GI will follow him closely while we work on feed volume, stopping only when Frankie shows us he’s reached his limit. That lack of structure is a little unnerving, but the encouraging news is that he’s been stable lately and has already increased to 2ml/hour. Even more promising—his output decreased at that rate, suggesting his body may actually be absorbing nutrients.
This decision has been anything but straightforward. It’s been a rollercoaster of opinions from numerous specialists, each trying to make the most informed choice for Frankie’s care. The stakes are high. His next surgery carries serious risks—including the risk of significant blood loss and, devastatingly, the possibility of losing him. We need to be absolutely certain about the timing.
Earlier, when one surgical representative warned that delaying surgery could result in his two bowel segments becoming incompatible in size, we were all ready to move forward. But with different providers at each meeting, consistency has been a challenge. When we finally spoke with his primary surgeon, she revealed that Frankie likely has very little, if any, distal bowel left—and may instead be reconnected directly to his colon. That changes everything. The sizing mismatch is no longer a concern, and long-term TPN is likely unavoidable. Her recommendation: continue feeding his proximal bowel until we reach the maximum he can tolerate. That, more than anything else, will help guide when to move forward with surgery.
The coming weeks are going to be a whirlwind. Moving to the med floor is a big step—it means less intensive care, more responsibility on me, and a crash course in managing Frankie’s complex needs. We’ll be organizing deliveries, setting up nursing care, leaning heavily on my mom for help with Henry, prepping our home, and even trading in my car for a van to accommodate all of Frankie’s medical gear. On top of that, I’m trying to work as much as I can.
We are excited. We are nervous. We are overwhelmed. And we are endlessly hopeful.
As we prepare for this transition, we’ve also realized just how many supplies we’ll need—things like shelving, large trash cans, diapers, wipes, and storage solutions. Insurance doesn’t cover many of these essentials, including the size 6 diapers Frankie wears for his distended belly. If you’d like to support us in this next chapter, we’ve created an Amazon Wish List with some of the items we’ll need to safely bring Frankie home.
Thank you for walking with us through every up and down. Frankie’s homecoming may not be the final stop on this journey, but it’s one we’ve waited a very long time for.
Amanda
