Doctors Concerned, Baffled

Kylie has been feeling really good physically the past couple of days. She has been up and around a lot. The tough part about yesterday was just seeing how sad she was. She is so ready to go home and just looked depressed and expressionless yesterday. I tried to think of everything possible to cheer her up. We went for lots of walks, took a trip to the rooftop patio, painted her nails, listened to music. I finally called Kaycee and told him to bring Carson up. I thought that might be really therapeutic for her. And it did help. It was just really great to be together as an entire family for an evening.

This is Kylie's current medical situation: She has been going down for an x-ray every morning. The partial obstruction that was an issue a couple of days ago is all cleared up. But unfortunately, there is a new development. The x-ray is showing that Kylie's large intestine is very distended (as was the case a year ago). When she had her reconnection surgery a week ago, the intestine was absolutely, completely normal in size. It is such a mystery as to what would be causing this distension now. The doctor and radiologist have also observed that a good portion of the colon is smooth and does not have features. This is not good. They should be seeing what they called, "features". So, what does all this mean? She may possibly have an infection in her large intestine. They started treating her for an infection today. The really nice thing is that they are opting not to test her for infection because if they did and the test came back positive, she would be confined to her room. So, they are just going ahead and treating her without officially testing her. Dr. Abdessalam is absolutely baffled as to why all of this is happening based on the completely normal results of the motility testing. She has had just a slight fever in the past 24 hours which got me really concerned last night even before I knew about the situation with her colon. She had been completely fever-free before yesterday. The doc has put her back on a regular diet now that her obstruction is not an issue. It will be interesting to see how her colon handles the food.

Things I am thankful for today...for Kaycee who has spent the past two nights with her so that I could get sleep at home, for how well Carson is doing at Opa and Oma's and the chance we could all be together last night, for Kylie's renewed spirit today, for the wonderful doctors we have caring for our little girl, for all of the incredible support and prayers from family and friends, for a God who will never leave us or forsake us and who continues to uphold us in the midst of discouraging times.