Monday, March 21, 2016

Thankful to be home after today's appointment...

There are certainly many gaps between this blog entry and the last... but here is the update from today's appnt.  Thank you all for your prayers and concerns.

We are not having surgery tomorrow thanks to a UTI that has recently been causing high fevers.  I'm strangely thankful for this infection....

Shea's fluid build up and some bleeding around the outside of his brain is no better, but it's also not worse compared to 3 weeks ago.  Since he is not having acute symptoms, they will let his body heal from the UTI and try to naturally achieve equilibrium of his head/brain for 3 more weeks.  As before we will watch to make sure he doesn't have headaches, vision changes etc etc...

Then ...the same routine... repeat MRI, see what it shows, and make the decision on the surgery or not at that time.

One other odd factor is that the ventricles of his brain... have shrunk very significantly since the last visit, to almost slit ventricles.  We are all unsure why, because his shunt is set on the very lowest ventricle drainage setting.  Dr Li hopes that the brain tissue doesn't continue to follow suit and shift  inward toward the ventricles as it has in the past... but for right now the best thing to do it to continue to watch him..

For now I'm relieved to have dodged "number 10" since june.   It's a bit unsettling to be at a point that what is happening to Shea is not making much sense, not black and white, not predictable.... but God knows and I will be content.  

We also received his bone density test results, which were poor.  The treatment to address this isn't a safe option for Shea with his other issues going on right now... so that will be put on hold until down the road.

3 more weeks of some nervous anticipation, but very happy to have him home, safe and sound for Easter.