Aside from needing a small IV fluid bolus yesterday evening, Callie had a great night and we were home by lunchtime today. 

Callie was in so much pain prior to the surgery, especially in the last 3 weeks. We’re already seeing an improvement in her quality of life, and that brings us great joy.

Callie had her surgery to close her g-tube site today. Everything went as planned, and she’s spending the night recovering in the hospital. If everything remains stable, we should be going home tomorrow.

We’re very grateful to everyone on Callie’s medical team. The surgeon found some unusual tissue damage in the area, which was probably one of the reasons Callie was having so much pain when she had the g-tube, but everything’s repaired. It’s nice to be moving forward again.

Thanks to everyone for the prayers and kind words as we navigated the uncertainty of the past few months. We’re very proud of Callie and can’t wait to get her home and back to her normal routine.

Some of you know we’ve been having difficulties with Callie’s g-tube for almost two months now. And truthfully, it’s been giving us trouble for about a year, but we’ve always managed to find solutions.

Last month, after trying different types of tubes, different sizes of tubes, different positioning, and different skincare strategies, it became clear we were out of options. Callie’s scoliosis is so severe the g-tube was being pulled under her rib cage. This was causing her almost constant pain, even though she rarely complained about it. So last week, we had Callie’s g-tube removed. We hope the site will close on its own, but we’ve scheduled surgery for a couple weeks from now in case that doesn’t happen. 

We anticipated this — and Callie has been the biggest advocate for getting the tube permanently removed — so Callie has learned to take all her medications by mouth, and she is keeping up with her necessary hydration. Callie even swallows pills whole. I know plenty of adults who don’t swallow pills well, so we were impressed when she learned to time her swallowing to alternate with the back-up respiration rate on her bi-pap so she doesn’t choke.

This has not been an easy time for any of us. Callie’s g-tube has been one of her critical lifelines over the years. Having access to it has saved her life more than once when she was too sick to take medications by mouth. However, Callie has always faced life with more bravery than we could muster. And she’s faced this situation with the same bravery — she fully understands how important this g-tube has been in her survival, just like she understands surgery puts her life at risk. 

She’s never wavered in her confidence that this is the right path for her life. Nathan and I always make the final call in every aspect of Callie’s medical care, but we also consider her wishes. This decision also has the support of Callie’s medical team at Duke and her palliative team at Brenner’s.   

Even though Callie has shed a lot of tears over the physical pain she’s been in, she’s maintained her sense of humor throughout this entire ordeal. She and Nathan have a penchant for making up silly lyrics to well-known songs, and one the latest tunes around our house has been “another tube bites the dust.”