Tuesday, December 16, 2014
Day +119 so the Imodium does seem to be doing the trick but as we increased the formula we began to have a problem again. So last night we were very concerned that Katlyn was losing too much fluid again. We thought maybe the Imodium just needed to upped a tiny bit as her intake has increased so much. It was apparent last night that the doctor on call did not have the ability to adjust Katlyns dose. Which really does not surprise me. You really cannot have too many doctors making decisions about Katlyn. So we asked if they could just lower the formula to an amount that she was tolerating well and hopefully stuff would change a bit. The doctor agreed and also hooked her up to iv fluid for extra hydration where she was -600. Katlyn had some gravol and passed out. This morning seems great so far and things seem to be under control again. They have decided to increase to dose of her Imodium at the same time as putting her formula back up. So we have completely wheened the tpn now and Katlyns liver enzymes are going down which is great. Today Katlyn is getting her ivig infusion as normal. A test a couple of days ago indicates that Katlyns pancreas enzymes are low. Because she has so much output, there is a chance this test was diluted shoo we have repeated the test. We are also doing another more thorough test to see if she is not absorbing fat and studying why. If this is the case then Katlyn will start on some enzyme replacement therapy. We are anxiously awaiting the second test results to see if it is a true reading or not. Time will tell. Lastly Katlyn has a fever today. We are not sure why at this point but we are waiting on direction from her doctor to see what the plan is. Typically we would start antibiotics immediately. Katlyns counts are low so she is at high risk for infection.