During Danny's GI follow up appt that we had on Tuesday..... I think we've added another line in his forever growing list of diagnosis. We were discussing with the GI doctor our concerns that since the last surgery (the VEPTR revision) Danny will no longer tolerate his volume of food, he has been having GI bleeds (unknown from where, we're just getting blood clots coming back when we vent him), he gets very uncomfortable when feeding him his bolus feeds during the day, and he has alot of bile residual after feeding him. "Very interesting" is what the doctor had told me, so I thought "great another mystery coming from Danny". BUT then he went on to say this is text book symptoms for SMA syndrome (Superior Mesenteric Artery Syndrome). In easy language ... due to the extreme correction from his VEPTR rods and the loss of weight his anatomy is now pressing up against the main artery feeding into his stomach so it's not working properly. This is a VERY rare (would you expect any different from Danny) and could be life threatening disorder, BUT because this a an acute form (meaning Danny's body is doing this because of something) not a Chronic (meaning his body was "built" that way) we are hoping this is not too serious. Ok let me explain.....as if you google it to get more info or watch some of the youtube video's you're going to freak out.........in the scheme of Danny and because this was diagnosed early it should be controllable. We are heading down to CHOW on Monday so Danny can have an Upper GI done to confirm but the Doctor would be very surprised if Danny doesn't have it. SMA syndrome is VERY common to get after scoliosis surgery and because Danny had such great correction of his curve in the first shot (he gained 5" when all was said and done) and he's getting so skinny, the doctor says he can almost guarantee this is what's going on. I'm relieved that all Danny's issues are happening for a reason and a reason that we know why, BUT really?!? It's always one step ahead and 3 backwards, my heart just aches with all that Danny has to endure EVERY DAY OF HIS LIFE. What I wouldn't give to be able to take it all for him :*( What we ALL take for granted!
Our options so far for making this "better" are......
1. Danny will need to be on the feeding pump continuously so he'll have small volumes of food going through. If this doesn't work then
2. Trying to put pounds back on him to where the artery is cushioned once again, but with the height he has now it could mean ALOT of weight. He nor I want more weight ~ Bad option!
3. To try the GJ tube again......NOT an option as the last two attempts were failures due to Danny extreme sensitivity........SO that would mean he would to have a surgical placement of just a J tube to see how that goes. BUT then we go to dealing with med absorbing issues. Because if you go to J,( for some of you that are not "in" with the medical aspect of all this, LOL)......J tubes is like his G tube but instead of it going directly into his tummy like the G it will go directly into his intestines. That in turn gives a small window of time to absorb/digest medications. Not too mention another surgery, but this is an option.
4. I've been told there are possible surgical procedures for this, but I'm not sure what is all involved or how complex they are yet. Again another surgery, grrrrrrrrrrr.
Well I'm NOT impressed with his options BUT yet again Lil Man has hit a pot hole in life so we are going to have to see what are all his options that will continue to keep his best interest and quality of life at hand. All I know he is going to be pretty much stuck to a feeding pump all the time now, which I'm kind of bummed about....but we'll get by we always do.
Happy Memorial Day
12 hours ago