March 22, 2010

We got to bring Gabrielle home from the hospital today. What an adventure we have been on the last 22 days. As in the last update, last Tuesday Gabrielle decided to stop taking her enzymes by mouth. Because of this, Jeff and I put her on pedialyte to keep her hydrated. Jeff contacted the doctors offices on Wednesday to let them know what Gabrielle was doing which landed us back at the hospital. Gabrielle was given pedialyte the rest of Wednesday and the first part of Thursday. After talking with the CF doctors on Thursday as well as the dietician, it was decided that Gabrielle would be put on a new formula, Peptamen Jr. 1.5. This new formula is hyperallergenic and has the same amount of calories as her previous formula. As far as the enzymes, they have given us a powder form to put in her formula that will digest the formula prior to her taking it. We will use this until we can teach her to retake the enzymes by mouth. It took Gabrielle a while to take to the new formula but by Friday afternoon she had gotten back to her amount per feeding that she had previously been taking.

Friday afternoon the GI doctor had scheduled some blood work to be taken to look for possible food allergies, specifically milk and soy. This is one reason for the change in formula. He saw Allergic patterns from the biopsies that were taken from her small intestines during her scope the previous week. He also scheduled a stomach emptying test to see how long it takes for food contents to empty through Gabrielle's stomach. Gabrielle had to drink formula mixed with radiation fluid. Then she laid on a table for 2 hours for pictures to be taken. Good thing was she was tired and took a nap.

We have not heard from the GI doctor about the results of the blood work. We were told that the emptying test did show signs in the abnormal range which means Gabrielle's stomach does not empty as fast as it should. We also have not discussed this with her GI doctor so we are not sure what he will do with the results of this test.

Gabrielle has lost some weight since her last CF clinic weigh in last Monday. We return to both the CF clinic and GI doctors next Wednesday, March 31. At this time we will discuss Gabrielle's nutrition and what the next step is in her plan of placing a G-tube, as well as the results from the tests.

Please continue to pray for Gabrielle as we battle her nutrition and that we can get her eating solid foods again.

With Love

Jeff, Ashley and Gabrielle