Taking David home was exciting and nerve racking at
the same time. Not only was the task of caring for this special little boy
daunting but I was a new mom as well. I
had all the same fears that everyone new mom goes through. I didn’t really have
any experience caring for an infant.
When we brought David home he still had bandages on
his back from where they closed up the opening in his back. The bandages had to
be changed regularly and that was scary for me. Of course every time he pooped
it would get in the bandage and it had to be changed even more then I had
anticipated. His poor skin was so sore where the adhesive from the bandage was.
That part looked even more painful then his stitches. But the part that was even harder to adjust to was his shunt. As I mentioned in a previous article David has hydrocephalus. Hydrocephalus is a harmful build-up of cerebrospinal fluid (CSF) in the ventricles of the brain. CSF is a clear fluid made in your ventricles. It bathes and protects your brain and spinal cord. Normally, CSF flows from the ventricles, through the brain and into the space around the brain and spinal cord. A child’s body is always making and absorbing CSF. When the CSF cannot flow or doesn’t get absorbed the way it should, the CSF builds up. This is hydrocephalus. The build-up puts pressure on the brain.
David had his first shunt placed when he was just 3 days old. However, the first shunt never seemed to work correctly. The spinal fluid was supposed to drain through the tube that was placed in the ventricles in his brain and ran down his neck and into his abdomen. The fluid that came out of the tube would be absorbed into his abdomen. Instead of flowing through the tube the fluid was draining down the sides of the tube.
The advice we were given was to keep a close watch on his behavior. If he was sleeping more than usual, became lethargic, started crying inconsolably or projectile vomiting to call the doctor. So of course we were on hyper alert all the time. We were also told keep an eye on the soft spot on the top of his head. We were to feel it often and make sure it was not protruding which would be a sign the CSF was building. Not long after getting home we were checking his soft spot and it was not protruding but actually the exact opposite. It was so stuck in that it was very scary. No one had said anything about what to do if that happened. So we very quickly called the neurologist. He assured us that this was ok that it actually meant the pressure was just a little low. That momentarily put our minds to ease but made us realize how many things there were that we had to learn.
Over the course of the next week things didn’t improve with David’s shunt. We remained constantly concerned and watching for any changes. As I was putting him down to bed one evening I noticed that the place where the shunt was now laying flat. I felt his head and could not feel the tube. Once again we frantically called the neuro. He seemed to think that we were probably just mistaken. But because he was a wonderful doctor who always took a parents intuition seriously he agreed to meet us at the emergency room. When we arrived at the hospital our doctor was already there waiting for us. We didn’t even check into the emergency room he took us into the observation room to take a look at David. He took one look at him and said we need to get him into surgery.
The next few hours were a whirl wind. Our newborn baby was taken from us and rushed into surgery. After what seemed like an eternity we were taken to see him and given a room on the pediatric floor. The doctor had decided to pull the shunt back up and just reattach it. As amazing as it sounds shunt surgery is serious but so common for children with shunts that we were released from the hospital the very next day. Our issues with this shunt did not end there. Unfortunately it still never worked quite right. A month later we were back in the hospital. This time the doctor decided to replace the entire shunt.
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