Trial & Error

I was told the other day by the doctor that, "It's just trial and error now." This is not what I want to hear from doctors and surgeons when it comes to finding out how to help your child but at least they are honest here. The issue is the "stooling out" to the point that she is losing weight because nothing is retained in her system. Olivia is still on continuous feeds through the feeding tube to see how well she can tolerate the slower amount of food into her system every hour. We are slowly making progress and she is able to tolerate a little more each day. The next step, once she's taking enough through the tube will be to go back to bottle feeding to see how she will tolerate an, all at once, feeding. They have increased her acid reflux medicine and her pancreatic enzymes to see if this will help the stooling issue also. If not they may switch enzymes to a type that breaks down quicker as everything is just passing through her digestive system too quickly due the amount or lack of amount of intestine she now has after surgery.

To add to the problem, Olivia has managed to get some type of infection, like a cold basically. I noticed a few days ago she was very stuffy and coughing so I alerted Pulmonology & the CF team. They told me from the beginning that if I noticed any sign of congestion, coughing, etc. that it's best she is put on an antibiotic right away and to increase the amount of times we do her chest therapy so it doesn't develop into anything worse. So for the next 2 weeks they are monitoring her closely to get rid of that as well.

Although it seems, in my world, that we are having such difficulty I look at others here and know that we are okay. I've come to be friends with the mom next to Olivia so her and I share updates about how our children are doing. She is very strong and is expected to be here for at least another 3-4 months. I just can't imagine. We have our good days and bad together.