I’m a little behind here! Waaay back in June, before the perfect storm and all that came with it, K saw her motility specialist for the first time. Her ordered a sitz marker study, which we put off until the last possible minute because I did not think I was going to be able to get K to swallow those tiny plastic Os. However, she surprised me! I hid them in her baby food peas and while she caught me after a few bites, she agreed to keep eating them. YAY! So we started her x-rays that morning and returned on the 3rd and 5th days for more films at the same time of day. The last x-ray was done on a Monday and her follow-up appointment was on Tuesday. Perfect timing!
The image above is K’s lower abdomen 5 days after ingesting the markers. They should be mostly, if not all, gone by the 5th day after ingestion. They are basically all present. Dr. C said, “Well, now we’ve confirmed she has a problem from above, as well as below.” Super! But it is a good thing in that we knew we needed to be more aggressive in her bowel regiment. Without films, it is mostly guessing and frustratingly enough, TOO MUCH laxative and NOT ENOUGH laxative produce very similar results, so it is blind guessing most of the time. Controlling someone else’s bowel function is more complicated than you might think! So we had to do a full clean-out at home which was really difficult. She ended up having a lot of pain, vomiting, and some glucose issues…I think the next clean-out may need to be handled inpatient so she can stay more stable. After that, we started 4 tsp of Miralax both in the morning and evening and a 5ml dose of Senna every night before bed. I *think* it is working, but it is hard to tell. And she is losing a lot of water along with her stool….so I don’t know if this will be the ideal long-term solution.
He was happy that the Periactin is having a good effect and that she is eating more by mouth. We discussed her hospitalization in June and he did say that the gut shut down may have been triggered by the GI virus, but he said that if it happens again, we may have to do some more digging. I am hoping it does NOT happen again, though! He is putting off manometry testing for now, which is okay by me since it is sort of an unpleasant kind of test. He was pleased with how her GJ looks and that it is working for us as we had hoped it would. We follow up with him in December.
In other news, K had her repeat sleep study on the 30th, so hopefully I will have results from that to share soon and she sees Dr. K (her mito specialist) tomorrow. I have several things to discuss with her…the hospitalization, possible dysautonomia, K’s recent leg pain, and hopefully some guidance on the balance to strike between formula feeds/fluids/nutritional status and letting K eat by mouth (she has been having some glucose issues since starting back to school, among other things).