My blackberry revolted against sending and receiving e-mails the last few days so we are a bit behind in the update.
Saturday we got information from the doctors that the procedure went well and the tests came back negative for meningitis in the liquid. The neurosurgeons also indicated that the puncture was probably low in the intestinal track (colon) so there was a reduced risk of infection given the tube was likely not in the system for a significant amount of time. Given the remaining risk of peritonitis they wanted to keep him for a couple of days of observation. He hasn't had a fever and although they initially were going to put back in a feeding tube he ate well on Saturday so they decided against it.
He has also been having regular solid bowel movements with no sign of blood in the stool.
As we were feeling fairly confident in his recovery and felt comforted by our prayers, even though PJ was still in the hospital on Sunday, Renee and I decided that it would be ok for me to leave on a scheduled work trip back to the US. 8 hours of flying without any kind of communications seemed very long.
On Monday morning Renee arrived at the hospital to find that they had moved Parker to a new room. They had taken off all of the bandages so that the stitches were visible-- they opened him up in exactly the same places they had before. When Renee inquired as to how soon he could check out one of the nurses told her that not for a while as they had done a scan earlier that morning and were now planning to install a different kind of shunt. Confused and distraught, Renee spoke to one set of neurosurgeons and I spoke to another on the telephone who completed the information. They did not perform a new scan but in the scan from last Friday they noted increased fluid in ventricles of the brain. The previous fluid was somewhat on top of the brain and they had done a sub-dural shunt to relieve it. They were now discussing whether a more permanent ventricle shunt would be needed. They also told us that the liquid in the ventricles is more common in meningitis and was not unexpected with Parker, the liquid on top of the brain is less common. They are holding him for observation to determine if the ventricle shunt would be recommended but we are very much hoping this is not the case.
Renee and I had foolishly believed that the surprise elements of Parkers conditions were pretty much over. There was the initial week of the risk to his life where new things would come at us pretty fast, then there was the day they determined that he had profound deafness which, while not a complete surprise, was still a watershed moment. After that we let ourselves believe that was the end of unanticipated events and we could get on with structuring his recovery and adaptation period. So far that structuring and organizing is not going to plan as our little guy seems to throw new and unique challenges at us.
On some level this may be good for us as we learn to adapt and try to focus on goals and outcomes as opposed to plans and deadlines. We have been forced back to a level of spontaneity in living life as it comes at us that we had some how managed to schedule out previously. I think we both tend to procrastinate tasks that we don't want to do until just before a deadline but more recently we find ourselves getting it done along the way knowing that we may not have the opportunity to have as much time as we thought we would. Still, we would all be happier if Parker could find some other avenue of adjusting our priorities other than extended visits to the hospital.
