We wanted to share another update regarding Camila's treatment and explain why certain decisions have been made in her care. 

Before this illness, Camila had limited nutritional reserve. While her height has continued to track, her weight and BMI have been extremely low for her age, meaning she didn’t have much margin going into this complicated GI illness. Camila’s difficulty gaining weight is related to her unique nutritional tolerance, underlying diagnoses, and likely unknown genetic condition. 

Over the past eight weeks, Camila has been dealing with a combination of previously unrecognized SIBO, an inflammatory bowel disease flare, and a C. difficile infection. Together, these led to severe feeding intolerance, poor nutrient absorption, worsening inflammation, and increased unmet energy needs. Even when we were trying to feed her, her body simply wasn’t able to use what she was taking in. 

Because of this and very concerning weight loss, Camila now meets criteria for severe acute malnutrition.

To support her body while her gut heals, the team placed a PICC line (a long-term IV) and started TPN (total parenteral nutrition). TPN provides all of her calories, protein, fluids, vitamins, and minerals directly through her bloodstream, completely bypassing her digestive system. This gives her body a nutritional safety net, allows her gut to rest, and removes pressure to push G-tube feeds before she’s ready. 

There has been progress alongside the challenges. Camila has successfully completed a full course of antibiotics for her C. diff infection and is now out of isolation. She’s busy exploring the hospital in her wheelchair, which has been a huge emotional win for all of us. She has become quite popular on the unit, loves rolling up to her favorite nurses to help with charting, and has been bringing smiles to other kiddos on the unit with her light up wheels. Witnessing glimmers of her joy has begun filling our cups too. 

Camila is currently on day 6 of treatment for SIBO. Unfortunately, as expected, symptoms have worsened during this phase, which has been very uncomfortable for her and difficult to manage in the short term. She is also on day 11 of steroid treatment for inflammation and has now been on TPN for five days. We are waiting for her SIBO and inflammation to calm enough to safely try nutrition through her G-tube again. 

In terms of discharge, the goal is for Camila to tolerate nutrition in a way that’s close to how she was eating before this illness and flare, so that we feel confident managing her care safely from home again. That goal is a moving target, and there is still a long road ahead, not just to discharge, but to helping Camila continue regaining weight, strength, and stability once we’re home. We’ll also have ongoing conversations with Camila’s IBD team planning what treatment and monitoring will look like at home and outpatient, with the goal of preventing symptom rebound once she leaves the hospital. 

This hospitalization has taught us a great deal about how Camila’s body responds during illness, and we plan to use everything we’ve learned to better support her long-term care and reduce the risk of future hospitalizations. 

We hope this update has provided clarity on the cause of her hospitalization and course of care. We’ll continue to share updates while Camila is inpatient. 

Please continue to keep Camila in your thoughts and prayers. 

With love,
The Weilnhammer Family