Jax had his GI specialist appointment this morning. At first he was weighed with his clothes on and they thought he had great weight gain. I knew that it was way too much of a gain for my Jax. We went back and re-weighed without clothes (only a dry diaper) and sure enough, he LOST a couple ounces. Blech.
After all was said and done with the appointment, it's clear that Jax needs to get at least 10% more calories a day, which has always been hard since he has a volume sensitivity and would get sick if we pushed it too much. But since moving his nebulizer breathing treatments to the evening, his morning tummy has been MUCH better. So we'll be working on getting more calories in. The doctor knows that some of Jax's weight issue is keeping food in, but the other part is still the mystery diarrhea. It's either because he doesn't process sugar properly (fructose malabsorption) or it's an issue we haven't found yet.
We plan to slowly switch Jax from Neocate Jr to Pediasure formula which is a different fructrose base (and is actually a normal milk based product) and see if that helps with the diarrhea. In the meantime, we'll be scheduling the EGD scope and colonoscopy with tissue biopsies. His pancreatic enzyme function will also be tested. The doctor said that if Jax responds fabulously after the formula change, we can cancel the procedure, but we should get it on the books. As long as Jax reacts okay to the anesthesia, it should be an outpatient - one day procedure. We'll be attending a pre-op appointment a few days prior since Jax has a PDA-closure in his medical history (this was his heart murmur while in the NICU). So they'll be testing his heart function to ensure he can be put under for the procedure. It's been 1.5 yrs since he's been sedated (his MRI and TPN line in May '09) so it needs to be re-checked.
I feel good about our plan, although I know my anxiety will creep up the closer we get to procedure day. I of course feel awful "prepping" Jax for this sort of procedure since his GI tract will have to be completely cleaned out 24 hrs prior, and watching him get his IVs is always hard since all his veins were blown since NICU days. But I also know that my daily anxiety of counting his calories and ounces of food and worrying about his weight is also driving me slightly crazy. I just want to make sure he's ok, and if he has some sort of condition, we need to know so we can start treating it and help him gain weight and relieve his awful daily diarrhea. So we'll see how the next 2 wks go with transitioning him every few days with more of the new formula and less of the old, as usual, we shall see.
As I was packing everything up to leave Jax's appointment, I heard Jax and his lovely diarrhea. I changed him quickly so he wouldn't be sitting in it for the drive home, and I'm very glad I did. I took his diaper off and was STUNNED. He had what looked like blood in his diarrhea. I saved the diaper and hunted the nurse down. She got the doctor and he tested it (yes, he had a test kit in his lab coat) and sure enough, he had blood in his stool. The doctor isn't too alarmed, but we'll be watching for this more now.