Joshua's Journeys #16- The S Word

Oh shunt! Today is the anniversary of Josh's VP shunt surgery. This is not something that is part of CHARGE Syndrome, but nonetheless Joshua needed one. Joshua had hydrocephally, what one of the NICU docs described as "lightbulb shaped head." The shunt is a device placed in the head that helps take cerebral spinal fluid off of the brain. The fluid is reabsorbed by the body. Basically, there was a device put in Joshua's head which had a long tube that went down the side of his neck all the way towards his stomach where the fluid would then be reabsorbed by the body, taking the fluid off of his brain. The "VP" part of the shunt is ventriculo-peritoneal, meaning ventricles of the brain, to the peritoneum which is the belly. Sounds tricky, and it is. The shunt was what we felt was Josh's biggest challenge. We knew he and we could deal with all the aspects of CHARGE, but when you are messing with the brain it is very serious business. We were told that there would be the possibility of shunt revisions--in which he had--where they remove the shunt and then place it on the other side of the head because of infections. After all, the shunt is a foreign object to the body. The shunt is programmable in that you can adjust how quickly the fluid is being taken away. If you go too quickly that can be detrimental, as would leaving too much fluid on the brain. Measuring head circumferences every day became part of our routine. And once home, Josh had to go weekly to the neurosurgeon for checks, but more of that to come later.

At any rate, today was Joshua's first haircut. He actually was born with a good amount of hair, very blonde and very long and thick. Poor babe had to have his head shaved where the shunt was going to be placed. So nurse Tina did the honor of cutting some hair and made a cute card for us as a first haircut keepsake. The neurosurgeon was our least favorite person involved with Joshua's care, and it was a shame because we would have to become very involved with him due to the complicated issues that can arise from shunts. Again, more of our frustrations later, but if you remember the post "Andy is Toast" we were not happy with him on many occasions. Unfortunately I do not have many positive words to say about shunts, hearing the word "shunt" makes my stomach turn because of all the issues that can go along with it. Joshua's crazy shaved hair allowed the opportunity for him to sport some really cute hats. It took some getting used to, there were many times we'd look at him and he'd be kicking his legs because he managed to yank his hat over his eyes. This happened a lot of times after he was discharged and would be driving him to and from appointments. I'd look in the rearview mirror, hearing him in need of suctioning, and he'd be crying from his hat being over his eyes. It was frustrating to have to stop to suction and stop to move his hat, but he needed the hat on to keep the gauze over his wounds after the surgery. Regardless, Josh looked so cute in all of his hats. And I still think that with the hat on (so his head wasn't shaped like a light bulb) Josh looks so much like Auntie Christy!

Recooperating from surgery:


Josh and his many hats: