Our Week with Doctors!

The girls with our Pediatrician, Dr. Ma.

It started Friday the 14th with our Pediatrician, Dr. Ma. She had set up all our other appointments with the Pediatric Gastrologist, Dr. Shover, who set up our Pediatric Surgery appointment with Dr. Weidner. I couldn't believe how fast we got in to see everyone. Dr. Ma on Friday did the basic look over and ordered a battery of tests.
On Monday the 17th we had a Pediatric Dentist appointment. That went OK with a little coaxing but the x-rays were traumatic. We did achieve a full panel which gave us a better picture of their age. Mercy is 13/14 based on that. But the dentist did not believe Joy to be 8. He felt based on her 6 year molars that she was probably just 6 and possibly 7 but 8 did not fall in line with what he was seeing. We may change her birth year when we readopt.
On Tuesday we had the Pediatric Gastrology appointment and got alot of samples and nutritional info and more tests. We then went up to the labs for "The Blood Draw". They had to stick Mercy 3 times and it was quite traumatic so of course by the time Joy went panic had already set in. Collected urine samples and then took them to get ice cream. We were all pretty worn out!
On Thursday we had a Barium Swallow study scheduled at 9AM and the doctor and techs were great with the girls. Mercy went first so Joy could watch and see it was not scary. They let me stand by her and I got to watch and see that the barium stopped pretty much just about collar bone level. Didn't go anywhere except back up. Which confuses me because she seems to be eating ice cream and thin soups, fudge bars and other liquid things. So either the barium was thicker than those things or she is spitting everything I have been giving her up. I have not been watching her spit cup but I suppose I should start. Not so much for a waste of food but I really need a more accurate calorie count. Joy was next and there were two areas of strictures. One was higher and very small. The other was lower and while the barium passed it was a very long and narrow opening.
We then had our appointment with Dr. Weidner at 2PM to discuss the results and review the mornings study. He felt like it would be best to do a scope on the 8th to see if there was actually an opening for Mercy or if it was completely closed off. He may try dilation's at that time. He is also going to replace the Baird Button which is what I feed her through. They don't use them much in the US and I am having a hard time getting another tube to connect with it to feed the food through. He will replace it with a more versatile one that we can even do a night drip so she is not without nutrition for long periods of time. He will try dilation's on Joy while he is in there seeing the extent of her damage. Both may be candidates for the replacement surgery but he did not feel qualified nor did he feel anyone in NM was. He said he could call to Denver's Children's Hospital but would probably need to go east somewhere. I then told him of a wonderful Doctor I had been communicating with at Cincinnati's Children's Hospital and told him all he had done and explained to me and would chose him if we needed to go elsewhere. He asked his name and it turns out he knows Dr. Mark Levitt well. It would not be until we get some more weight on Mercy and she is stronger to withstand such a surgery. She weighed in at 62lbs and 5'1" tall and Joy is 44lbs and 44" tall. It would probably not be until spring or summer till we could get her to that state. They think she needs another 20-25lbs on her.
Tears come to Mercy's eyes whenever I explain the procedures we are doing or going to do. I try to explain that she would be put to sleep and she wouldn't feel or remember anything after the surgeries. I asked her if she went to sleep when they put her feeding tube in and she said no. I asked if they put something to numb the area so she didn't feel it. She said she felt it. I asked if it was just pressure feeling she said "No, they tie me down!" I can now understand her and Joy's shear panic and tears when medical procedures are mentioned!