We had a big meeting today with the entire team taking care of Casey – GI, pulmonary, palliative, ICU, nursing, surgery, etc. We asked a friend of ours to sit with Casey so that we could both participate in the meeting (Thanks, JH). There were about 15 people in a conference room going over our options, of which there are only two. Although both of these are to fix her problem eating, we primarily have to consider potential increase/decrease in overall pain, as well as risk to her lungs.
One option is to place a tube below Casey’s stomach (in the jejunum part of her intestine), so her food bypasses the stomach. We tried this at UCLA once and it didn’t work at all (actually put her at greater risk of pneumonia). However, our situation has changed now as without it we may have nothing, since it is too painful for her to eat with her stomach right now. So even though we really don’t think this will work the second time around, we may still try. Casey’s anatomy is much more complex now, which leads us to believe there is less of a chance that it will work, but we still need to consider it. The doctors have ordered some tests (such as an upper GI with bowel trace) to make sure she is a candidate in case we do need this option.
The other option is to fix the surgery Casey had when she was 1 month old, as well as repair the large hernia she now has at the border of her chest. This would be a serious surgery, but a successful outcome would mean she could still use her stomach and not reflux into her lungs. We should also be able to feed her at a higher rate / fewer hours per day. Unfortunately, she has some anatomical problems (like the progressively worse shape of her chest) that may not make surgery reasonable. Like the first option, there are some tests that need to be done to confirm if she is a candidate (such as a CT scan).
Even with the tests above, our primary concern continues to be Casey’s lungs – she has a number of respiratory treatments around the clock to address her lung collapse. The xrays have looked about the same for last few days, but she seems to be breathing a little better, so we are hoping tomorrow’s xray will finally look better. While we are focusing on her lungs, we still need to line up the tests above so we are ready to go with one of those options when the time is right.