As usual, miscommunication with the staff at the Children's Hospital is usually one of our biggest obstacles. Allie's gastric emptying test began with numerous pages to doctors and specialist. Allie's order stated she needed a gastric emptying test done with liquid. This is not what the doctor and I agreed to at our last visit. Allie was go be fed her blenderized diet and this would show us how her stomach empties with solid food. We know her stomach empties okay with liquids. However, the nuclear medicine they use to follow through her system won't attach to solid food so the intestinal transit part of the test had to be done with liquid. I was mad - this is not what Dr. Tipnis and I had agreed to, however if we wanted to check to see if her intestines are working properly, we had to do the test with liquid.
Another thing I was upset about is Dr. Tipnis told me he wanted the test done here because they now do a new type of gastric emptying test. With the new test, children don't have to lay on the table very long. The children are able to get up and move around but come back for an X-ray of the stomach every half hour. Well, that wasn't how it worked. They used the same old test of making the child lay on the table for 1 1/2 hours straight. I was not happy!!!
One more miscommunication - I received an email from Allie's nurse stating the times we would have to return to X-ray throughout the day for another scan. We were to return there every hour until 4:00pm. Once we started her scans, the tech said we didn't have to return until 2:00 and after that we were done. Nothing we talked about at our last doctor appointment turned out right - it makes me very frustrated. I guess this is just another reminder of why I originally moved her care out of the Children's Hospital of Wisconsin!
Okay - now that you've read my soap box, I"ll get to the important stuff.......
Allie did great with her gastric emptying test - she even actually drank about an oz of the Gatorade with the nuclear medicine in it. The remaining was put into her tube. She laid on the table for the 1 1/2 and cried on and off the last half hour. It was a long time for her to lay there but we were prepared with movies. Allie wasn't scared for the test but just mad because she had to lay on the hard table for so long. But she did awesome!!! We left the hospital around 11:00 and didn't have to return until 2:00.
Allie's second scan only took 5 minutes so that was great - she didn't mind that at all. After that, we checked into the Extended Stay hotel. We were not able to get into the Ronald McDonald house today but we are still hoping for tomorrow.
Tonight we took Allie to Chucky Cheese. We had never been there before and Allie had a blast. She loved playing all the games and riding the rides. Now we are back in the hotel just relaxing.
Tomorrow Allie gets her final X-ray to end her intestinal follow-through test. After that, we meet with her team of specialist to go over the gastric emptying results and intestinal follow-through results. We will also be discussing her endoscopy and botox injection schedule for Thursday. Matt and I are thinking that if her stomach is emptying okay, there is no need for the botox injection - we'll see what Dr. Tipnis has to say.
So, our day went well and Allie was a champ through everything. Glad today is over but I'm really dreading Thursday! Thanks for keeping Allie in your prayers - you guys are great!!!!