It's friday...

and we are still here. 

Wednesday, due to all of the retching, they did a shunt series (x-ray) and a CT of the head to make sure his shunt was working properly.  That checked out fine, but I found out Wednesday night that on the xray of his shunt, they saw a "mass" behind his heart.  Matthew was already scheduled for an MRI of his brain, and his botox on Thursday, so they added on a CT of the chest.  I was a little freaked.  I mean, the kid doesn't need one more thing and the "c" word was brought up.  I didn't want to freak though, and didn't even google it (which is a first for me).

Thursday afternoon, we learned the results.  His MRI is unchanged (they were looking for a chairi malformation..which can cause retching) but his CT showed a diaphragmatic hernia that was fluid filled, and pressing on his esophagus.  The doctors seem to think it is very plausible that this is what has been causing his retching at least for the last few months.  It's also possible that it isn't the case, but we gotta hope, right?? 
Surgery came by last evening and was concerned it was fluid filled.  It didn't make clinical sense to them (I didn't understand why it puzzled them, but asking them just confused me more), why there was fluid in it, so they ordered an upper GI, and possibly an aspiration of the fluid from it (don't have any clue how they'd aspirate it, but it sounded not comfortable). 

Preliminary upper GI results from this morning say that there is no stomach involvement, which I believe is good.  I got a chance to talk the radiologist, and asked her about the fluid in the hernia.  What she said made complete sense.  Because he has a shunt that empties fluid into his abdomen, fluid is going to get caught in the hernia.  Why didn't I think of that?  It's about a 5cm all the way around hernia, which I guess I understand is fairly large for his size.  The surgeons seem to be dragging there feet to do anything about this on a Friday, but I am not done fighting this battle, especially since everyone seems to think this is causing his retching, and is making him miserable.

And as an added bonus {insert sarcasm}, they saw another clot in his jugular vein on the CT.  Infectious disease says that now we have a total of 3 clots (one in his heart, one in his subclavian vein, and now one in his jugular) that there is a good possibility of a clotting disorder.  WONDERFUL; exactly what Matthew needs; one more specialist.

We were hoping this weekend we'd be able to go, but it looks like that won't be the case.  It's gonna be a few more days at least.

He is still requiring a LOT of ativan to keep him somewhat comfortable (enough to sedate a horse, actually...and that isn't an overstatement. The kid metabolizes it like crazy!), so we're hoping the surgery and fixing the hernia will make a big difference for him.  I think he's trying to set a record for the amount of procedures needing anesthesia in one hospital stay.