The neurosurgeons called yesterday and Jack is scheduled for surgery on July 30 at around 11 am. He will have to have a MRI on July 27 to determine exactly which surgery he will have. Bottom line is Jack has too much fluid in his ventricles better known as hydrocephalus or "water on the brain". We need to do something to prevent all this fluid from causing too much pressure on his brain. Fortunately, Jack's noggin has just given way and his head has continued to grow bigger so as far as we can tell right now we have avoided any brain damage from the pressure so far.
Dr. Sacco will be performing either an Endoscopic Third Ventriculostomy (ETV) or placing a Ventriculoperitoneal Shunt (VP shunt). The way to relieve the pressure on Jack's brain is to help the ventricles drain the CSF—this is the job of the ventricles. Jack’s ventricles just don’t seem to be doing their job all that well.
We are hoping that he can just perform the ETV. If he does the ETV, he will poke a hole in the floor of Jack’s third ventricle. Ideally, this will help the CSF drain out into the subarachnoid space and eventually get absorbed into the bloodstream (no big anatomy lesson today). There is a possibility that if he does this it will not work. Jack may have an absorption problem as evidenced by the CSF that has already collected around the brain. If he does, it does not matter how easy he makes it for the CSF to flow out like it is supposed to. The other thing that could cause the ETV to fail is if there are bands beneath the floor of the third ventricle that prevent the CSF from flowing out. In most cases, neither the surgeon or the parents (or child) can know for a couple of months whether the ETV was successful. Just doing the surgery releases some CSF so you get relief for a while from that and the CSF has to build up again for the child to become symptomatic. Knowing all this, we would still prefer to try the ETV first. There is no hardware left behind that can clot off or get infected or get kinked or malfunction in any other way. Jack will have a MRI of his brain on Friday, July 27 at 7:30. He will require sedation for the MRI. The MRI will help Dr. Sacco further evaluate the anatomy of Jack’s ventricles. Based on the MRI findings, he will determine whether he is a candidate for the ETV.
If Jack cannot have the ETV or if the ETV fails, he will get a VP shunt. The VP shunt would divert CSF from the ventricles into the abdominal cavity. Basically a tube with a valve is inserted into the ventricles and it lets the fluid out into the abdominal cavity where it gets absorbed. We know and know of many children who have had a good experience with VP shunts but we would just rather not have to deal with the VP shunt because it requires hardware being left in the body. The hardware can become infected or malfunction. As Jack grows into adulthood, he would have to have another operation because the tubing that is initially put in will not be long enough as he grows.
Jack's niece, Elise, spent Saturday and Sunday with us this past weekend. They had a good time. Elise is a super easy going baby. Anybody else ever have a 2 1/2 year old volunteer to go to bed at 7:15 pm when she usually stays up until 9 or 10? We all had fun but I could barely move Monday morning.
Here are some pictures from this weekend and other recent pics....
We were trying to help Jack see that he is not the only baby that wears CPAP so notice the "baby" with a CPAP mask...
Two cuties in one tub!!!
Isn't she adorable?
A little playtime on the deck...
Jack riding a ride on toy in the kitchen, doesn't he look proud of himself?