We met with Dr Bruce today to read the runes (MRIs) of the area and hear the proposed surgical solution. This was my first time meeting Dr Bruce and he’s definitely as genial and nice as has been advertised. Plus he’s got a fanstastic wit thoroughly in keeping with his Scottish heritage (from Edinburgh).
The reading was consistent with the cortical dysplasia theories that we had been getting from other facilities. What makes Alexander relatively unique is that it’s apparently unusual to see a focal dysplasia covering a relatively large area. Typically, focal dysplasias tend to be very small and the non-focal ones usually result in the whole hemisphere being removed.
As it was explained to us, the neurons in the brain migrate outward from the center and then back again to form the pathways. This particular region where the dysplasia is had something interrupt that migration and the neurons are just disorganized. Because of that disorganization, the signals coming from that region are not normal and thus leading to the seizures.
It has been obvious by now that the witches brew of medications has been unsucessful in controlling the seizures and that surgery to remove that area of the brain is required. It does him no good for the disorganized neurons to stay in there because of the bad signals so it’s got to come out and the quicker, the better.
There is a 70-80% chance that removing the dysplasia will stop the seizures cold. There might be a few 24-48 hours after surgery because of irritation to the brain and they might be different in character (more tonic-colonic) but afterwards should go to nil provided all of the affected area has been removed. The area in question will fill with spinal fluid and there isn’t any expectation of deficits in relocatable services/pathways.
The concern is the proximity of the dysplasia to the motor pathway and because the dysplasia is on the right side, the left side would be affected. Unfortunately, it’s hard to say what the ultimate effects would be…it could be undetectable to weakness and no fine motor skills in the left hand (the hand is more likely than seeing the leg affected) making that hand useless. We won’t know that for some months to come.
The hope is that Dr Bruce will get all of the dysplasia out in the first surgery. There are other areas that might need attention further down the road which might require follow-on surgery but the big deal is to get the known area taken care of first making it easier to fix other areas later on.
Of course, any time you’ve got surgery, you’ve got risks up to and including death but we’ve been assured that because there appears to be nothing else wrong with Alexander, these possibilities are remote but cannot in good conscience be reduced to nil.
Thus, we’re at the point probably every parent in the world dreads… having to sign the consent for surgery. When you’ve got the best in the world doing the operating, that’s pretty much a no brainer (Dr Bruce at this point shows his wit indicating that if we want the operation, we’ve got to sign the thing…apparently a bit different way of putting it than Julia is used to but certainly on the mark nonetheless).
The first hour in the surgery will be used to put him under the influence of anaesthesia and take the opportunity to insert a more permanent intravenous (IV) placing. This will allow IV fluids to be given without having to continually stick him. After seven weeks, six of which have been in three hospital facilities…Alexander’s veins (and Alexander!) have been poked and prodded enough that he’s doing a good representation of a pin-cushion.
The actual surgery itself is expected to take three or four hours but we’ve been ordered not to freak out if it goes a bit longer. As far as we’re concerned, take your time and do it right. The old measure twice, cut once rule is just as important in surgery as it is in carpentry!
Once out of surgery, Alexander heads straightaway to intensive care (PICU) where he’ll spend the next couple of days to recover from the surgery. He will have quite noticeable swelling on the right side down to his right eye but that should subside. He’s then expected to get back to feeding and will be stepped down appropriately as his condition improves. With any luck, the seizures will be gone and he will go home with much less medications than he’s been getting (and we get a more alert baby, happy bonus!).
That means we’ve probably got another week up here and a follow-up trip six weeks after he comes home along with scans for the next couple of years (but that can be done in Raleigh).
If that’s the price we’ve got to pay to have our son have as best a quality of life as we can give him, we will gladly pay it.
BTW, Alexander passed the ten pound mark today!