January 7, 2015 "Not again, but Praise the Lord!"

We received a a call at 5:30am from Dr. Andrew Heling, the round attending. Rayden's shunt has been leaking terribly. I guess I wasn't overreacting last night. CSF leaked through 2 blankets and several gauze. This is the third time! He told us the neurosurgeon restitched his incision and ordered an MRI to see if the shunt was malfunctioning. They may have to go back to the OR. The nurse started an IV and put him back in an isolet just in case. Michael and I jumped up and flew to the hospital. Although we were just at the Ronald McDonald House 5 minutes away it seemed like an eternity before we could get there to comfort him. They waited for us before they took him down to the MRI. I sat in the room with him while he got the MRI. The technicians were so good with him. They wrapped him in heated blankets that were rolled up all around his body. They gave him his pacifier and some 'toot sweet'. He never even cried. After reading the MRI results, Dr. Elton came to see us. He said the MRI showed that the shunt was functioning well. He decided to adjust the shunt to 1.5 hoping to flush out any protein in the CSF that might be causing a blockage. If it continues to leak fluid he will want to go back in and take the shunt apart to see what's going on. Rayden has a pseudomeningocele, an abnormal collection of CSF contained in a cavity within the soft tissue around the brain. You can see in the picture that fluid is pooling up under the skin where his shunt is located.

Michael and I saw the MRI images of Rayden's brain. We knew it had changed dramatically from what was showing on the ultrasounds when he was in utero. Dr. Elton stated that the minimal brain tissue had now turned into an entire frontal lobe being present and his chiari has shrunk. His brain is filling in as the fluid decreases. A lot of fluid still remains but WOW, Praise the Lord!