How is Evan?
The place for regular updates about Baby Evan

We said our goodbyes to Evan early this morning as he was wheeled into the operating room to get his baclofen pump installed. That procedure was successfully completed in less than an hour. Soon afterward out came Evan accompanied by his neurosurgeon who was sporting a knowing grin on his face.  The grin was as a result of our “A-HA” moment.  You see, after last weeks’ surgery (when the catheter was inserted in his brain) we had 2-3 good days with Evan finally feeling relaxed. The next few days he reverted back to the  agitation and distress similar to before the surgery.  The doctors, nurses and all of us where perplexed at why his spasticity returned after the days of calm.  Theories were thrown around the pediatric ICU, but no one really understood what happened…until today.
A post-op catscan revealed that the cathater that was inserted into the third ventircle of Evan’s brain had slipped out of its position.  It probably slowly worked its way out of position explaining the gradual regression during the week. So now what…
Evan is going back to the operating room on Monday morning to re-establish the catheter into the correct position, this time using a more robust tie-down. In order to limit the size of the lump under Evan’s scalp, during the original procedure the surgeon had opted for the method which failed (we still love him).  We are disappointed that Evan has to go back through another surgery, but happy to know that we have the plan in place to get Evan back to comfortable.
The hours following today’s surgery were quite difficult for Evan. Here is a picture of a sample pump I placed on Evan to give you an idea of how big it is in proportion to the little guy.  The actual pump is installed under the gauze in the same location on the other side of his tummy.

After finally putting him on a steady IV of pain meds he was able to fall asleep for the better part of this afternoon. The next couple days are going to be difficult. Unless something remarkable happens we’ll wait until Monday afternoon for the next update.