I wanted to provide an update on Brielle, as we have had such a great deal of support, love, and prayers. We are so thankful for you all! We did get results from her hospital stay. It was some good news and some bad news. The overall good news is that things can be fixed. She was diagnosed with extremely slow GI motility. There is medicine to help with this problem. We are working on getting the right levels so things move and we don’t end up back in the hospital for another in-patient clean out. The good news is that her nerves and muscles are in tact within her GI tract. The problem is that they are, according to the doctor “very, very, very weak”. We will be using medicines to help stimulate them to become more active. Praying that this will help them kick into action! The bad news is that because of the slow GI motility she has three spots in their GI tract that are extremely stretched. When this happens it becomes difficult for them to work, as they become like a stretched out rubberband that can no longer contract. We are using medicine for the next 6-9 months to see if they can heal on their own. If those spots do not begin healing and shrinking on their own, then she will have to have surgery to repair these areas. The doctor said it is a 50/50 whether she will need the surgery.
With extremely slow GI motility this also means that when she eats the food sits in her and moves so slow that it builds up. Eating caused pain because she was already feeling full. Of course that creates all sorts of problems on both ends. Not wanting to eat has become a big problem. We are meeting with a specialist for this issue. Her food issues have actually progressed so much to become a phobia of trying anything new or eating anything that has ever caused pain. As you can imagine the list of foods she will eat is always dwindling. It is a real struggle, so we are charting her meals, snacks, meds, and pediasures. She has three pediasures a day to ensure she is getting enough calories and nutrients. We have a reward and incentive program in place to help motivate her. So far she has earned a family day of bike riding. It was her first reward for doing a great job these first two weeks out of the hospital. She completed the chart and hit all of her goals!
Her GI system is working better and she is more responsive to eating. We have a plan from the doctor and it is working so far! It has been a challenging few weeks getting everything going in the right direction, but her time in the hospital provided for a good reset. She seems to be doing better every day. It is almost like retraining her brain to eat and poop now that she has been fully cleaned out and we now have medication to keep things moving. We began seeing specialists to help with that brain retraining, and they have been great! We have a team of people helping us at Children’s Health in Dallas and Plano. We are so grateful for their expertise and help.