Our Next Steps...Gastric Emptying Scan

From that point we were told to schedule a "Gastric Emptying Scan."  This is a nuclear medicine test that is performed in the hospital.  They would have Charlie eat a meal that had been laced with radioactive material and then through a series of timed "photos" be able to determine how quickly food is moving out of her stomach.  I immediately called to schedule the appointment hoping to get it done as soon as possible.  The scheduler at UCLA told me that the orders needed to be approved by the radiologist and that until that point we could not schedule an appointment, and that even then there was a two week wait at minimum.  As much as I hate being pushy, I called later that day and again the next.  They assured me each time that the doctor would get to it soon.

It just so happened that while we were waiting to hear back I was having a conversation with a friend about what had been going on with Charlie.  It turned out that she knew some higher ups in the UCLA system and was able to get us in contact with them. The next morning I was contacted and had an appointment for first thing the following morning!  Such a relief!!!!  She was such a godsend in this entire process.

Our doctor had explained exactly what foods to pack for her and so we did, we came prepared.  Upon arrival the tech hurriedly took us back and REPEATEDLY explained that he was very busy but that he was doing everyone a favor and fitting us in.  He then told us that he only needed her sippy cup of milk and that it was not necessary to use the solid food that the doctor told us to bring.  We questioned him, got his answer which made sense at the time and went ahead.  She drank her milk and we did the test.  She screamed and kicked.  It took an act of congress to hold her down and strap her to the table at each 15 minute interval.  It was painful to see.  We found that singing the "Wheels on the Bus" was our only chance of keeping her calm. At the end of the test he told us that it looked to him like the results were normal....her stomach emptied a little over 50% of the milk.  We were SHOCKED!!!  Not possible.  We were going to see the severity of the problem, not IF there was a problem.  We left there dumbfounded and immediately called Dr. M. and our UCLA GI doctor.  Dr. M got on the phone right away and was just as surprised.  He said he would contact the other doctor to see if they could go over the report and develop a plan.  Of course it was a Friday afternoon and we were left wondering what on Earth was happening all weekend.

Monday morning rolled around and as the kids were filing in the classroom door, my phone rang.  It was the tech from UCLA calling to explain that our doctor had called him very upset.  He had performed the test incorrectly and therefore it needed to be redone!!!  (Shocker, I know!) So, we were right from the start, the test was invalid because of the use of only liquids and no solids, plus the fact that the amount she ingested was not even measured.  He said he needed to talk to our doctor but would call me back within 10 minutes.  Sure enough he did.  He wanted us to come back in right away.  Only problem was that the test had to be completed on an empty stomach.  I ran as fast as I could to daycare to stop them from feeding Charlie only to find her taking her last bite of breakfast.  So, we had to wait four hours before we could start the test.  I was of course unprepared to come with a meal at all, let alone one that was appropriate for this test.  I had to quickly leave work and run all over town trying to find food to make her that they could lace with the radioactive materials.  My awesome teaching partner then met me in the kitchen where we made five different varieties of sandwiches just to make sure we would have one that was right.  I frantically called my mom to meet me at the hospital so I didn't have to be there alone with Charlie (the thought of having to go through strapping her down every 15 minutes and holding her still by myself was daunting.)  Judson was in a meeting and couldn't leave this time.

We got there, they did the test.  We kept Charlie busy by playing on the iPad while we waited it out.  She was much better about going in the machine this time, and actually smiled while we sang.  When the test was done we had the results we were "looking for."  Funny to say it that way.  It was almost peace of mind to be back to a place of knowing what was going on.  He told us then that the results were definitely abnormal but that the doctor would call us to go over everything.  Then the waiting game began again!!!!