Johnny was about five weeks old when we made the decision to have the shunt placed. The surgery was scheduled for the next week. The weekend felt like an eternity. Johnny’s irritability was at an all-time high. He spent all his time being held, but still fussed and cried the majority of the time. He would calm with white noise, so we often had water running or the TV on a static station with the volume maxed. As his parents, it was heart breaking to know he was so uncomfortable. We wished we had had the shunt place a month earlier when we were in the PICU.
When the day finally came to have the shunt placed, Johnny’s head had grown approximately 6 centimeters in just over two weeks. Our exhausted family anxiously awaited the surgery that we had hoped and prayed we were going to be able to avoid. To avoid directing us what to do, the neurologist and neurosurgeon had chosen their words so carefully we had no clue if we were making the right decision. We had heard of many risks of shunt infections that lead to having to have another surgery, that we were torn on the choice. Because we were still learning so much about hydranencephaly, we feared we were making Johnny suffer through an unnecessary surgery. We hoped and prayed for a good outcome. Seeing Johnny’s fussiness increase with his head size, we convinced ourselves that the surgery was the right decision.
Shortly after the surgery, we met with the neurosurgeon. He told us that Johnny had done very well during the surgery and that he was in recovery and would be joining us in the PICU room shortly. He explained once more that there were two incision sites that would be covered. One was behind his right ear and the other on his stomach. Johnny was back into the room just moments after we arrived. He was still asleep, and wearing a large hat. He looked so fragile.
After he woke up, Johnny was noticeably more alert. He wanted to be held and cuddled. We had feared that he was not going to eat as well after the surgery, but he proved us wrong by wanting to nurse right away. His cries proved he was still in pain, but the medicine help. He remained hooked up to an IV overnight, but nursed as well. The next day, his spirits were high and he had plumped up nicely from the extra fluids. He was able to be discharged just two days after having his shunt placed for continued recovery at home. He was a totally different baby. For the first week or so, he still liked extra cuddles, but once the initial pain from the surgery subsided his fussiness did as well.
As Johnny recovered after the shunt was placed, he head size slowly decreased. Some noticeable ridges formed on his head and his forehead comes to a slight peak, but those are the only negative side effect we’ve had since getting the shunt. The shunt is working well, and there is no question that it is doing its job! At eleven months, Johnny’s head still measures in about the 80th percentile, but without the shunt it would have continued to grow and would still be above the highest curve on the charts. He now even fits into the hats that come with his matching outfits, something that we only dreamed of when he was an infant!