The GI appointment went as expected for the most part. Jax started having a breakdown when we went into the room where he gets measured and weighed (he weighs 22lbs 11oz). I put him in a button up play romper (that we use for pj's since they make all pj's zipper for this size and up) which helped to get him undressed and re-dressed quickly and then allowed the doctor to examine his stomach/tubes/gut without taking a shirt off, so I'm starting to learn those little tricks :) Jax feels so comfortable with this doctor so that was really nice to not have any more breakdowns in the other room, EXCEPT getting labs...wowzer...my poor BABY!
So the doctor said his growth chart is really good (they monitor every little ounce to make sure his intestines are absorbing properly and he can continue to remain off TPN) and said his height-to-weight ratio is a perfect 50% (thus meaning, as we already knew, that Brady is SKINNY) and his weight is 25% for his age - AWESOME!
The doctor had a really good conversation with us about how Jax vomits MOST of his episodes the first half of the day, and how sick he is waking up each morning to such violent vomiting. While doing some research on my own this past month, I read up on "Cyclic Vomiting Syndrome" which is a specialty of Jax's doctor. Jax displays almost all characteristics of this syndrome, except that his symptoms are chronic and daily.
(Since I'm always trying to discount Jax having a life-long/threatening disease,) I asked the doctor if I were to vomit everyday and DURING the motility study that Jax had, wouldn't my results also show discoordinated nerve function = Pseudo Obstruction....he actually said YES. I know I'm always reaching at straws to try and make this disease "go away", but I can't help but wonder (hope) that maybe this is something he'll grow out of, and maybe not cause him to be on a tube the rest of his life, or end up on a central line, or shorten his life....I have to keep trying right? But the doctor did say that since he has a chronic, everyday problem, it is more than likely Pseudo Obstruction.
So anyway...the doctor is very happy with Jax and said he would've never thought in a million years he would not have seen a hospital stay since May and agreed that his supplements MAY in fact be keeping his motility going and keeping him from relapses. Like I've said, he may not be cured, but he has "life" now. Jax's second set of labs have finally been mailed back to us, so we're anxiously waiting for them in the mail. This is the Detox DNA labs that the alternative doctor has ordered. We'll hopefully be having a phone conference to see if this doctor can see any missing puzzle pieces and see what other natural supplements may be recommended.
The GI specialist decided that since Jax is still gaining at a good rate, and his height/weight ratio is perfect, that he doesn't want to increase his calories, but since he's actually at 80% of the calories they would normally prescribe, he had his urine tested today (OOOOH gluing a urine bag on a toddler is NOT FUN) to check to make sure he has enough fluid in his system. Since we are shorting his system 20%, we want to make sure his organ function is okay - so I'm glad we are having that checked. The doctor also had his blood taken to check his Carnatine levels. This is something the alternative doc was going to check (but hey, we prefer it free thru our specialist) - something about this level would affect his cellular level (mito disease)...not sure what it all means, but I say go for it! I love having the hope of finding missing pieces...
So all-in-all, it was a positive follow-up, with the next one scheduled 10 wks from now. I'm very anxious to hear what the alternative doctor has to say hopefully next week.
Oh yeah, and the GI doctor didn't like the look of Jax's prolapse coming out of his stoma site (the stomach lining coming out of the tube site). He said if it stays the way it is, we can wait until our next follow-up, but if it gets worse, we'll have to make an appointment to see the surgeon...which means Jax will have to have a surgery with a new hole put into him and let this one heal up....Ugh, we don't want that! I don't want anymore surgery or holes put into him :( So if you could all cross your fingers for this kiddo for that, we'd appreciate it!