July 8th 2009

 You have to go with me on this.....

Let's pretend that we time travelled into the future. Not a long time into the future, just a few weeks. And we are going to pretend that today was Aiden's appointment with Dr. Guts. And we are going to pretend that Aiden cooperated with being poked and prodded.

Dr. Guts walks into the room and asks, "Which one of you is Aiden?" Hey, he has a sense of humour! He is of Irish/Scottish ancestry so he has to comment on how much he likes Aiden's name.

We then sit down and talk about you know, the issues and why Aiden is there visiting with Dr. Guts. I told him about the Down syndrome conference and how Dr. What-ever-his-name-is discussed health issues in children with Down syndrome; specifically the symptoms of diabetes. Which that topic got my wheels to spinning because Aiden has a lot of the same symptoms, he just isn't sick like children with diabetes. So, what if Aiden's lack of weight was caused by something else.

And then I told him about Aiden's cath lab and how Dr. Secondary Pediatric Cardiologist did not see anything during the cath which would lead him to suspect that Aiden's heart was the culprit. And how I opened my mouth about my suspisions. Which prompted surgical controversy during the conference and led to Aiden visiting with Dr. Genes and Dr. Guts.

I told him about Dr. Genes doing all his testing and the results. And how Dr. Genes thought that Aiden has a gluten sensitivity (but not celiac) and wanted to put Aiden on a gluten restricted diet. Dr. Guts asked if we had made the switch and I told him no because 1) Dr. Pediatrician didn't want to make any changes to Aiden's diet until after we had seen Dr. Guts and 2) Aiden is already on Pediasure, which is gluten-free and 3) Aiden considers ice cream and Club crackers to be in the 4 basic food groups.

As Dr. Guts was leaving the room to get the results of Dr. Genes' tests, he pats me on the back and tells me he likes me.

Then he comes back in with the results. The number that Dr. Genes said was elevated and causing the gluten sensitivity, according to Dr. Guts is irrelevant. The main number - TTG - was in the perfectly normal range, so he does not want to make any changes to Aiden's diet. The liver enzyme that was checked is a little elevated, but that could be due to Aiden's heart.

Then he poked and prodded Aiden. And he asked if I knew Aiden had Down syndrome.  HAHAHAHAHAHAHAHAHA!!! He asked what I had been told about Aiden's nystagmus, since it is apparently rare. I told him that every single kid with Down syndrome that we knew has it.

He didn't feel that Aiden's liver or spleen were enlarged, which is good. He did hear a heart murmur.

He is going to get the normal result numbers for the 72 hour poop test from Dr. Pediatrician, because I don't have those numbers on hand. And he does want Aiden to under go another celiac panel in 6 - 9 months because apparently at the age of 3 is when the testing becomes reliable.

Dr. Guts did say that IF Aiden needed a feeding tube, that he or Dr. General Surgeon Who Likes to Play with Children's Hearts would do it. I flat out look at him and said that doctor was not even allowed to look at my child, much less stick him with a needle. But he doesn't feel that Aiden would benefit from either a NG tube or g-tube.

Translation = Dr. Pediatric Cardiologist has just been given the green flag in cracking open my child's chest.