In February we started to notice Cicily having loud gassy bowel sounds and pain when we moved her legs around. Her GI (digestive system dr) ordered an x-ray and they found she had free air outside of her colon. This means she had pneumatosis intestinalis (small wholes and inflammation in her intestines). We tried giving her straight pedialyte for a week to give her colon rest time to heal and repeated the x-ray and it was still not looking good. So on March 7, Cicily was admitted to the hospital so she could be on IV nutrition (TPN/lipids). She was there 6 days and the x-ray showed improvement so they tried pedialyte again and after 10 hours the small holes were back. So we decided we wanted to bring her home and continue to give her TPN at home to allow more bowel rest for healing. Chris and I were skeptical from the very beginning that her colon would heal. In speaking with the palliative care (comfort/child's not going to live long) doctor, we found out that most kids with degenerative brain conditions end up needing TPN because their intestinal muscles wear out. We've seen signs of Cicily's intestines losing function so this made sense. Typically colons heal in 1-2 weeks. We're in week 4.
So now our only option to heal Cicily's intestines would be surgery, where they would cut her intestines and piece the healthy ones left back together. In Cicily there aren't many healthy parts to piece back together so this option would really create a whole world of new problems. If Cicily were healthy we'd of course do this option and she'd heal and be ok. But, as Cicily's intestines are wearing out, so also are her other internal muscles. Unfortunately there aren't any tests on internal muscles to check for function (I asked). So Cicily will stay on TPN for the rest of her life (we think, of course we never say never for Cicily).
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