Today marks day 20 of Camila’s hospitalization, which feels like an appropriate time for another update.

While Camila has been receiving treatment for SIBO, her response has not followed the typical course her medical team would expect. Because of this, her inpatient GI team has been working closely with her outpatient IBD team as well as the Neurointestinal Motility team. At this point, there is growing concern that Camila is also dealing with gastrointestinal dysmotility, meaning her gut isn’t consistently or effectively moving food, fluid, and gas forward. This leads to trapping in the small intestine and unfortunately causes significant pain and discomfort for her.

The encouraging news is that her gut is starting to wake up. We’re seeing more gastrointestinal activity and movement, which tells us that things are beginning to turn back on, even though the movement is still uncoordinated and painful right now. While this phase is difficult, it’s also an important step in understanding what her body needs.

After a brief day of gut rest, we are trialing fluids through her G-tube again today to see how her body responds. These trials help guide next steps and give the team important information about how and when we may be able to safely reintroduce nutrition through her gut.

Given the increasing concern for dysmotility, the plan is to formally schedule outpatient care with a GI motility specialist. Depending on how she does over the weekend, the team may begin the process of transitioning Camila home on TPN, which would allow her to continue receiving the nutrition her body needs while her gut heals. If this becomes the plan, we would receive extensive training on managing TPN and caring for her central line (PICC) at home.

In addition, Camila’s GI team is reaching out to Children’s Hospital of Philadelphia (CHOP) to consult with both their IBD and genetics teams. With the emergence of another complex issue like dysmotility, they want to see whether CHOP has encountered similar cases in their patient population and whether there are additional genetic evaluations or testing that could help guide her care moving forward.

Camila will also be slowly and carefully weaned from steroids under the guidance of her IBD team. This will be a gradual taper to avoid rebound inflammation and to ensure her body remains stable throughout the process.

There is unfortunately still a long road ahead before discharge, but we are well supported here and continue to learn more about how best to support Camila, both now and long term.

Although Camila hasn’t felt well enough over the last couple of days to explore the unit in her wheelchair, she continues to find comfort in her favorite songs, books, and shows. The unit’s music therapist regularly stops by to sing her top-requested songs from Frozen, Moana, Encanto, and Laurie Berkner. Camila is also eagerly awaiting a visit from the therapy dogs any day now.

Thank you, as always, for the love, prayers, and support you continue to send our way. We’ll keep sharing updates as we have them.

With love,  

The Weilnhammer Family