Tuesday, May 7, 2013

Meeting Dr. Kaul in Cincinnati

Our bus trip was a pleasant experience.  Since Levi had been feeling so poorly, we expected to have some issues along the way, but he didn't make a peep the whole trip.  He liked looking out the window, and I'm sure he liked the gently sway as we traveled.  Our driver was very kind.  He pulled us out of the very long line and let us board first, since we'd been standing for so long with Levi.  We transferred buses in Indianapolis.  We were running a bit behind and so didn't enter the station but went directly to the other bus.  One of the workers ran back to get my suitcase, and Mom saw her put it in the bus.  When we reached the Cincinnati station, we were the last ones off the bus, and Mom's bag was the only one left.  Mine was nowhere to be found.  Of course I hadn't taken my own advice and packed a change of clothes on my carry on bag.  I was sure that someone had grabbed it by mistake and wasn't too upset until I realized that the scale I use to weigh the food for Levi's Ketogenic diet and the cord to the feeding pump were both on that bag!  I spent a mostly sleepless night, paid an exorbitant amount for a taxi to run me to Walmart to buy a change of clothes, and was thankful that my bag had been returned during the night.

Monday afternoon Levi was scheduled for a gastric emptying test and a clinic visit with Dr. Kaul.  I was a bit nervous to meet him, considering he is the top motility specialist in the nation.  I guess I expected him to be arrogant, but I was pleasantly surprised.  He walked into the room with a smile, laughed and teased with the nurse, and set us right at ease.  He asked me questions and actually listened to me, and let me explain everything without interrupting me.  It was SO very wonderful to be taken seriously, and not feel as if I were being blown off, or labeled as overly dramatic.  His nurse, Jackie, was just as terrific as Dr. Kaul.  They looked at his tummy and discussed a few things, then the doctor thanked us for coming, and Jackie explained the inpatient testing.  Wednesday will be getting the IV started, taking bloodwork, etc.  On Thursday they will sedate him and place catheters all throughout his intestines.  One catheter will come out of the stoma, another out of the feeding tube area.  On Friday they will hook these tubes up to computers, which will measure motility in every area of the intestines.  This will continue for several hours, and they will explain it to me throughout the day.  We will be discharged on Friday and contacted the following week with a plan, unless they find something that needs to be taken care of immediately.  I surely wouldn't mind coming home with everything already taken care of!

He has been slightly cranky and sleeping a lot.  He doesn't want anyone to mess with him, that's for sure!  But otherwise he's doing very well!  We are feeling all the prayers being sent our way!  Thanks so much!

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