This is going to be a long post as I need to cover a whole week of news.
Where do we go from here?  That was the question we set out to answer at an all-hands meeting last Tuesday afternoon. Mom, Dad, Grandma, Grandpa, the head doctor and representatives from each department joined in the meeting.  The Doctor started with a narrative of recent events and then we went around the table giving everyone a chance to share their observations and insights.  At that meeting we came to a consensus that Evans status was still too unstable to move on to HealthBridge.  We agreed the goal is to establish a stable baseline.  Meaning a few days in a row where his meds, poops, sleep patterns, fevers and reflux are stable and similar.  We hope Evan reaches that point over the next couple weeks.
Although we have tremendous faith in each of the professionals here at CHOC, we decided to seek out a second opinion. You can never discount the value of a fresh pair of eyes.  After asking around and searching the web, I found one of the best pediatric neurologists who, coincidentally, was just a few miles away.  He runs a cash only practice and had evaded our radar up until this point as he operates outside of the managed care system.  The upside to a private pay doc was that he called back at 5:30PM to set up an appointment to see Evan the very next afternoon.
For a few days Evan had been experiencing extremely loose stool.  At one point it actually shot up his back and came out the neck of his shirt (it was actually funny at the time!). Since it went on for a few days, the GI doc wanted to re-check that his G-Tube was resting in his stomach and not further down toward the colon.
So off we went on a ride to the x-ray lab.  Good news was Evan fell asleep just before we left the room and stayed asleep until after we returned.  At the lab, I moved Evan to the x-ray table where a doctor was waiting with a fresh batch of barium smoothie.  He turned on the camera and began injecting barium into Evans G-Tube.  It only took a few seconds to see the injection flowing through his GI tract and thankfully everything looked perfect.  It’s likely the antibiotics previously prescribed were the culprit so we cut them out and put him on clear fluids for the rest of the night to give his system a chance to settle down.  In the morning we started him back on his formula and he has been reasonably well since then.

Pre Barium x-ray
Dr. injecting barium
Post Barium x-ray



Wednesday afternoon the new neurologist came by as promised.  He spent about an hour reviewing Evan’s file and consulting with the Medical Director of the Pediatric Intensive Care Unit.  He then came in asked us lots of background questions and examined Evan.  We spent the next hour hearing much of the same news that the CHOC neurologist had previously delivered.  The difference was in the delivery and detail.  When we were done talking we had a much clearer understanding of why the various parts of the brain were damaged and how this affects what Evan is doing.  To our surprise he then had a couple recommendations.  The first was to continue to raise the baclofen dose and secondly the doctor ordered a fresh MRI.  We had the MRI from 4/8 (4 days after the accident) and were surprised to learn there would be significant changes in just a few weeks.  Everything moved quickly and the MRI was scheduled for mid-day Thursday.
In order to make sure Evan was completely still for the MRI he was going to need anesthesia which would be administered via IV.  This meant we had to stop his formula again to make sure nothing was in his stomach and overnight the nurses put an IV line in his foot.  At 11:30 am we rolled down to the pre-procedure room where Evan promptly feel asleep.  He actually remained sleeping during the hour-long MRI and never even needed any anesthesia. If you have ever had an MRI you know it is extremely loud, so I figured him sleeping through it wasn’t a very good sign.
(Now would be a good time to stop reading and make sure you have some tissues nearby.)  We received the first report early Thursday evening and it wasn’t good.  In just a few weeks the changes in Evan’s brain were dramatic.  His brain actually shrank and the areas which had been deprived of the most oxygen shrank the most.  In some areas there were actually holes where there had previously been healthy brain tissue.  While this was what the doctors expected to see, it was quite shocking to us and dramatically reduces the chances of a significant recovery.
Ok…deep breath…that was not easy to write about.
Last piece of news is that we received a visit from a pediatric neurosurgeon who had an interesting idea to help ease Evan’s discomfort.   He is currently investigating some ideas.  Stay tuned for more on this development…