Day 41
In support of
The Weilnhammer Family
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The Weilnhammer Family
Late last week Camila had a CT scan that ruled out strictures or any mechanical blockage, meaning there is no surgical issue driving her symptoms. What the scan did continue to show were dilated bowel loops, which her team believes are secondary to inflammation. That distinction matters. It means we continue forward with medical treatment rather than pivoting toward surgery.
Camila receives her second biologic infusion today. In pediatric IBD, many children experience more significant improvement after the second infusion, especially when it comes to feeding tolerance and overall gut function. The first dose often initiates the healing process, but the second dose is frequently when things begin to stabilize in a more noticeable way. We are hopeful this next step will continue calming the inflammation that has been driving so much of her distention and discomfort.
At the same time, we are addressing the motility side of her care. The motility subspecialty team believes her intestines need both time to heal and support moving things forward. We restarted very slow trickle feeds through her G-tube and have already seen some success gradually increasing her hourly volume. Even small increases feel meaningful right now. She also started a medication that stimulates serotonin receptors in the gut to help improve intestinal movement and coordination. It can take about one to two weeks to know whether this medication is truly helping, so we are watching closely and giving it time. If her pattern of significant gas and distention continues despite better inflammation control and motility support, there are several additional treatment interventions we can try, along with further diagnostic testing if needed.
What we are hoping for now is continued slow, steady forward progress. The team has also clarified that the goal is not for Camila to go home on TPN (YAY!). The plan is to remain inpatient with full support until she is back on 100% enteral nutrition and her gut is truly tolerating feeds again. There is still work ahead, but we feel good about the plan moving forward.
We also want to extend our gratitude for all the support we have been receiving. From text messages, meal drop-offs, gifts, errands, and home maintenance, we have continuously felt your love and care.
Frankie and I also want to acknowledge how many of you have reached out asking how else you can help. Please know that it means so much to us. The difficulty, when in the middle of a medical crisis, is that it can be hard to step back far enough to identify what would help most.
So instead of trying to clearly define it, we wanted to open the door. If you have ideas or ways you’d like to offer support, whether while we’re still inpatient or after discharge, we welcome you to share them in the comments. We’ll read through them and be sure to circle back about what would be most helpful.
We are incredibly grateful for this community as you support us through the hardest season of Camila’s life. We look forward to sharing more updates as we have them.
With love,
The Weilnhammer Family
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