Gastric Emptying Scan

Madeline has been experiencing bad stomach pain since December, and it has slowly gotten worse. In April Madeline essentially was not eating and was only being sustained through formula put into her g-button; but then that started to be a problem. We had put several calls into her GI doctor as well as to the dietitian and they would suggest something and we would do it and then a few days later we would be back to where we started. Her GI doctor could only say that Madeline has an eating disorder and that she is special. Well I was not happy with that answer. I know my daughter is special but she needs to eat and you need to fix it. By mid April I was at my wits end because for three days straight my daughter had not eaten a drop and I was just struggling to keep enough liquid down her to prevent another hospitalization. So I put in another desperate call into her doctor and the response I got was "I am out of options, there is not much else to do." I was livid, I felt that my hands were tied and I was reaching out for help and it was being denied. I was not going to watch my daughter suffer any longer, and so with that I fired the doctor. I called over to Dallas Children's hospital to see one of their GI specialists and surprisingly I was able to get an appointment with what looked liked a skilled GI doctor the next day. Within being in the room with Madeline's new GI doctor for five minutes I knew my prayers were answered and we were going to get help. She immediately put together a three step plan and immediately had a direction that she was headed towards. She decided to first start with putting a camera down Madeline's stomach to see if her gastritis was flared up again. We were scheduled for camera test a week later where it was discovered that my daughter had a yeast infection in her stomach caused by the steroids she takes for her asthma. Grant and I were greatly relieved that it was a simple problem that is easily treated with medication, but at the same time we were annoyed that my daughter has been suffering since December and close to hospitalization due to not eating for something that you have been easily detected if he had put a camera down her stomach. Since then we have done two other tests and both have come back normal. One of Madeline's stomach problems is that her stomach does not empty like a normal stomach. She is on medication to help her stomach produce motility so that it will empty like it should. Madeline's GI doctor wanted to do have another gastric emptying scan to see if the medication is working and to make sure that it is not contributing to her stomach pain. This test is a "fun" all day thing. Madeline gets to start out the morning eating chicken noodle soup mixed with eggs and steamed veggies and then for the next four hours we take 8 pictures at different times. There is a period of time where you wait an hour between pictures. During this time Madeline is not allow to eat nor is she allow to lay down. Since this has been our second time, we knew what to pack and how to prepare. We brought movies, books, and other activities to do to pass the time away, but we didn't need those because the children's hospital recently opened a Build A Bear store and Madeline absolutely loves Build A Bear. During our hour wait we participated in the fun at the Build A Bear store dressing up our new stuff animal to add to her growing collection. Madeline was a smiles which was nice to see. Afterwards we visited the gift shop where she found a monkey puppet that had her name written all over it. Madeline loves monkeys and so she was excited to get a puppet to add to her collection. All these things helped to pass the time away and this time around the test didn't seem to drag on. It really felt like we blinked and the test was done. Afterwards Madeline and I ate a gourmet lunch at the cafeteria in the hospital, Madeline sure enjoys the pasta they have there. Though I wish the circumstances were different, I sure enjoyed the time I had with Madeline. I love the moments we have together and the experiences that we are able to create. It makes having a medical procedure not feel so scary when you can have a date with Mom.

On a side note, Madeline is getting better her pain has gone almost completely away and her eating has improved. We are not quite where we should be, but we are no longer having to be sustained through a g-button. Now we are just doing our usual supplemental feeds and for the most part life has turned back to normal and Mommy and Daddy are no longer worrying about their daughter.