Jack is recovering from an emergency surgery that took place on Monday night to repair his shunt. He’s home now, and doing well, though with some more battle scars. Those of you who have been readers since February 2014 may remember that the shunt was placed to allow the cerebral spinal fluid to drain properly out of the ventricals of the brain, since the tumor destroyed some of the natural pathways that exist, and the third ventriculostomy performed by Dr. Piatt did not seem to resolve the issue. Unfortunately, shunts are a poor technology, and they fail at a rate of about 20%… meaning that if you have a shunt that works perfectly for its entire lifetime of 10 years, you can expect at least two surgical revisions during that time– though many patients have many, many more revisions than that.
Here’s how it all went down: On Monday morning, Jack woke up happy and playing, but John made a comment that his balance seemed a little ‘off’ somehow– which is hard to discern in a toddler who, well, toddles. A few hours later we received a call from Nurses n Kids stating that Jack was vomiting and not himself. I raced home to pick up John and Sam (who was home sick with a fever that day) and then to pick up Jack. Jack’s nurse also commented that he seemed “shaky”. Once home, we played with blocks and watched Signing Time together. But no matter how slowly I set the pump for his food, Jack couldn’t keep anything down.
I called Jack’s pediatrician, who recommended that I call neurosurgery based on my concerns about both the vomiting and loss of balance. Neurosurgery recommended a wait and see approach, given that we have been dealing with some vomiting issues related to Jack’s changing food volumes. But, by about 2p.m., things really went downhill fast. Jack started staring off into space, acting really out of it, and we saw lots of increased vomiting and lethargy.
With the help of Jack’s uncle Tucker, I took Jack to the new ER at Nemours. We were seen by a doctor who initially made Jack’s diagnosis. She agreed that what she was seeing looked like hydrocephalus. We waited around until about 10:30 for an MRI, during which time Jack grew more spacey and sleepy. It was very frightening. Once the MRI was complete, things moved fast. Dr. Piatt had been at home watching for the scan, so by the time we made it back from MRI to the ER, he had already called in and was on his way. The surgery took a few hours, from midnight to after 2a.m. Thankfully, a full shunt replacement was not necessary- though an additional incision had to be made to move the catheter that enters the brain to a more helpful location.
Less than 48 hours after the surgery, Jack was completely back to his usual self. It was a stunning turnaround. Though the two-day hospital stay was nice in its own way– we got to see many of the people with whom we became very close last year and got to experience the new and improved hosptial accommodations– Jack was very eager to get out and was making a sign that was a cross between “sunshine” and “outside” over and over again as we wheeled him out of his room and to the car.
I’m sorry to report that this hasn’t been easy on Sam. He enjoyed his unexpected time with Gramma and Nana, and happily resumed his play with Jack for the first several hours that Jack was home, but then suddenly stopped short, looked aghast at his brother, and said very clearly, “Jack a boo-boo on head,” and pointed repeatedly. He cried and needed lots of hugs and reassurances, inspected the rest of our heads for boo boos, and he’s been acting out quite a bit ever since. He repeats this phrase several times daily, trying to understand. What a vast difference from a year ago, when neither child understood any of this. Now, things are starting to become clearer to them, making the way forward less so for us.
But we’ll continue to do our best.