Because Nicholas wasn't cleared for tummy time (freshly placed g-tube probably not too comfortable), the thought was that his head was flattening out because he spends a large amount of time lying on his back. Since fluid is easier to move around than brain matter, the thought was that the bones of the skull may have shifted. We were first trying to rectify the situation by positioning his head different ways while he slept or laid on the floor in his play mat or on his pillow on the couch. That didn't seem to help. Then he was cleared for tummy time. He haaaaaaaaaaaaaaaates tummy time. It is like a nuclear war happening here when Nicholas is doing tummy time. The next thought was that with the addition of tummy time and the re-positioning of his head, we will be able to get the head to a "normal" shape.
None of those ideas worked and his cone head seemed here to stay. At his last pediatrician appointment, the doctor suggested it was time to meet back up with the neurosurgeon who had placed the shunt and see if he wanted to give Nicholas a helmet to help re-shape his head. We had been prepared for this since before birth, so it wasn't really a surprise for us. We had originally been told they would look at putting him in a helmet after six months, so it made us a little nervous that they were looking already, but if it's what is best for Nicholas, we will move forward with it.
The neurosurgeon required a CT scan to see him about the helmet, and since he was going into radiology anyway, the neurosurgeon requested a shunt series as well. He had both the CT scan and the shunt series Monday. Mike took him in at 2 p.m. and the nurse at Nicholas's pediatrician arranged for a child life specialist to go back into radiology with him since I was at work and Mike had to stay in the waiting room with Emily and Zachary. I met Mike at the hospital after I got off work at 3, we traded cars so he could go to work and I have the car with the car seats, and I went back into the radiology department to wait for Nicholas to come back.
Wednesday, Nicholas saw his neurosurgeon. The neurosurgeon told Mike that everything on his CT scan looked fantastic and he doesn't think that Nicholas needs a helmet at this point. The reason that Nicholas's head is "coning out" is that his brain is growing (yay!) and the shunt isn't removing the cerebral spinal fluid fast enough, so the CSF is being pushed out anywhere it can go - and that just happens to be out of the soft spot in the back of Nicholas's head, creating the cone shape. The good news is this is a fairly easy problem to rectify...we hope. We have found that sometimes things that are "fairly easy to rectify" cause Nicholas to have other issues.
The way the shunt works is that it is set to detect the pressure in Nicholas's brain. When the shunt detects that the brain has gone above that set pressure, it turns on and drains fluid until the pressure is back under what the shunt is set to and then the shunt turns off. When the shunt is set, the lower the number on the shunt the more it will drain. Basically, adults typically have a pressure of 100. That was Nicholas's initial setting. They set his shunt very conservatively initially because they wanted to remove CSF but they didn't want to do it too fast and cause the brain to pull away from the skull and cause a brain bleed. After a few weeks of draining at a pressure of 100, they lowered his pressure to 70, which is a typical pressure in infants. His shunt has been at this pressure since. On Wednesday, they turned his shunt down to 50. They warned us he will have so much pee as his shunt drains and also that he may be irritable. Hopefully this will fix the issue of the CSF oversupply.
The neurosurgeon required a CT scan to see him about the helmet, and since he was going into radiology anyway, the neurosurgeon requested a shunt series as well. He had both the CT scan and the shunt series Monday. Mike took him in at 2 p.m. and the nurse at Nicholas's pediatrician arranged for a child life specialist to go back into radiology with him since I was at work and Mike had to stay in the waiting room with Emily and Zachary. I met Mike at the hospital after I got off work at 3, we traded cars so he could go to work and I have the car with the car seats, and I went back into the radiology department to wait for Nicholas to come back.
Wednesday, Nicholas saw his neurosurgeon. The neurosurgeon told Mike that everything on his CT scan looked fantastic and he doesn't think that Nicholas needs a helmet at this point. The reason that Nicholas's head is "coning out" is that his brain is growing (yay!) and the shunt isn't removing the cerebral spinal fluid fast enough, so the CSF is being pushed out anywhere it can go - and that just happens to be out of the soft spot in the back of Nicholas's head, creating the cone shape. The good news is this is a fairly easy problem to rectify...we hope. We have found that sometimes things that are "fairly easy to rectify" cause Nicholas to have other issues.
The way the shunt works is that it is set to detect the pressure in Nicholas's brain. When the shunt detects that the brain has gone above that set pressure, it turns on and drains fluid until the pressure is back under what the shunt is set to and then the shunt turns off. When the shunt is set, the lower the number on the shunt the more it will drain. Basically, adults typically have a pressure of 100. That was Nicholas's initial setting. They set his shunt very conservatively initially because they wanted to remove CSF but they didn't want to do it too fast and cause the brain to pull away from the skull and cause a brain bleed. After a few weeks of draining at a pressure of 100, they lowered his pressure to 70, which is a typical pressure in infants. His shunt has been at this pressure since. On Wednesday, they turned his shunt down to 50. They warned us he will have so much pee as his shunt drains and also that he may be irritable. Hopefully this will fix the issue of the CSF oversupply.
this may be my favorite pic of your little dude. glad everything's going great... <3
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