Heartbreaking.
Since mid-April, Luke has been battling sudden, random bouts of illness. It always comes on in the morning and it's been happening every couple of weeks or so. The "episodes" usually last anywhere from 20 minutes to 2 hours and involve him vomiting up everything he's eaten for the past 2 weeks (not really- just seems like that much.) We're in constant contact with our pediatrician, Dr. Bravo, as well as Neurosurgery up at Stanford. Neurosurgery does not think it's shunt related (he's had a CT scan that came back normal) so we're moving on to examining his G.I. system. Luke is scheduled to have upper G.I. and small bowel series of xrays on Thursday morning.
We've examined his diet (food allergy?) and he's on a regular dose of Miralax to keep him going the bathroom (we thought it might be due to constipation) but nothing is proving constant. The only thing that is constant is that it happens in the morning, as I said, and that it's occurring every couple of weeks on average. That part is so odd.
The scariest thing is how sudden it comes on, how sick Luke is (he just throws up, cries and only wants Matt or I) and then as quickly as it comes on, he's fine. The last time was on Sunday (see above picture) but the time before that was July 3rd. He was throwing up every 15 minutes for an hour in the late morning but was starving and back to his happy, normal self by lunch time.
Blessedly, my good friend Christina was here for one of the episodes. She was able to drive Luke and I to Dr. Bravo so he could examine Luke mid-episode. At the time he thought it was constipation-related (he pressed on Luke's stomach and he almost immediately vomited) but he felt he definitely wasn't having a seizure (a very real possibility) so that's good news. The Neurosurgery nurse practitioner at Stanford said that examination was key because Dr. Bravo has now seen for himself what we're dealing with when this does occur. It's not just mom being over-dramatic!
We're still not entirely convinced it's not shunt related. My gut feeling is that it has to do with the tubing that is in his stomach. It may not be effecting his brain but the tubing may be interfering with other organs down there. That tubing was put in when Luke was 1 month old and I have to imagine that a lot can change in his system with growth. And since he has extra tubing in him for growth purposes, the possibility of it moving and disrupting other parts of his system has to be high. But I'm not a doctor so all we have is our knowledge of Luke, my relentless note-taking (it involves spreadsheets, charts and graphs- very impressive) and my ability to call and call and call until something gets resolved.
That's where we are with him medically at this time. Hopefully we can get this all resolved before we start our eye doctor appointments next month and September (surgery is a very real possibility) and our trip to LA in the fall (hopefully) to finally meet with Dr. Sanger, the movement disorder specialist.
Please keep our little Linda Blair (I can't remember what her character's name was in "The Exorcist"- you get the idea) in your thoughts and prayers. Until then, I'll be covering our house in plastic and buying lots of extra laundry detergent...
Just getting started...
Fortunately, a nearby paper towel added so some extra flair to the performance...
"Bow nose" and SCENE. 
