Cyrs

Cyrs

Thursday, September 12, 2013

Clarity.

After some tears and a frustrating start to the week, I am writing this post knowing we have a plan to begin Cameron's surgery.

We started the week knowing/hoping we'd hear from Dr. Bauer on Monday or Tuesday. After Monday passed by, Shawn called first thing Tuesday morning and Dr. Bauer returned the call requesting a meeting with myself, Shawn, Dr. Bauer and Dr. Morse together on Thursday (today). I know we don't owe an explanation to anyone, but for those wondering why we felt so frustrated with this request - to go to these appointments we drive an hour and a half one way, which means missing a minimum of 3 hours of work, plus the time at the hospital, a $50 copay each time we walk through the door and the gas money to get there and back. We are so eternally grateful for everything Dr. Bauer and Dr. Morse are doing for Cameron and for us, it's just such a stress financially and the constant waiting and anticipation of being told at each appointment that we'll know what's happening next time, takes a toll. Also, after more than two years of uncertainty, we thought we'd finally have some answers and a plan of action, only to have it delayed a couple more days. Oh well.

Regardless of our frustrations, both docs scheduled time outside of their own clinical hours to come to DHMC to meet with Shawn and I to discuss Cameron's case. We're truly blessed with some incredible doctors to care for Cam. Today we got a chance to sit down with both Dr. Bauer (Pedi neurosurgeon) and Dr. Morse (Head of Pedi Neurology and Epilepsy Specialist) to really hammer out a plan. They had brought Cameron's case to the Epilepsy Conference last Friday and said they had a "lengthy" discussion about what is best to do. We discussed the options that were already presented to us, but with some add-ins this time. The biggest concern that the doctors had at the conference was:

Cameron's MRI shows that the left hippocampus, amygdala and section of the temporal lobe are very obviously malformed. His original EEG showed the seizures come from the left side, but the PET scan shows there are "dark and cloudy" areas in both the left frontal and occipital lobes (unrelated to the obviously deformed parts). They aren't sure why it's cloudy, because anatomically (looking at the MRI) there are no abnormalities there.
They suspect that due to the abnormalities in the hippocampus, amygdala and temporal lobes, the rest of the left side of his brain has slightly less function. We also learned today that the left side of his brain is slightly smaller than the right side, which would make the comparison off because there is less brain function to look at. Dr. Bauer and Dr. Morse's hope is that by removing those three areas, the cloudiness would go away. It's as if his brain has a whole bunch of roads through it that all work fine, but cannot connect to one another because there is a missing bridge. There isn't as much traffic because no one can get anywhere, but once the bridge is fixed, the roads would work more efficiently. If they remove those sections of his brain, their hope is that the rest of the left hemisphere would function normally.

So after going through all of the options again, Dr. Morse asked if we had any questions. Honestly, we still have a million questions, but at that moment, all we wanted to know was, "What do we do?" So we expressed that we had no idea how to proceed, we didn't feel qualified to make a decision about brain surgery on our 3-year-old (and what parent does, besides, maybe them) and we didn't know what the best option was. Dr. Bauer shared that he thought the best option would be to do the limited surgery. He thinks that gives Cameron something like a 50/50 chance of coming out seizure free, which are good odds considering if we did nothing, he'd have a 100 percent chance of still having seizures. There are just a few more things they want to try to understand before doing the surgery.

The section of the temporal lobe that seems affected is a part that contains fibers for your peripheral vision. This is the spot they suspect Cameron cannot see due to the deformity. They want to have a baseline for his vision before the surgery is done so they know that if he has that vision now, he would likely be blind there post-surgery. If he already can't see it (as is suspected) then it wouldn't effect him at all, but they want to know. So for that, we do a Vision Field Test.

Also, the last time that an EEG recorded his seizure activity (despite two more 24-hour EEGs) was when he was initially admitted at 7 months old. They want to be absolutely sure the seizures are coming from the left side, so we do a SPECT scan. This involves Cameron being admitted to the hospital, connected to an EEG and an IV and we wait. They will lower his medication dosage to half of what it usually is and hope to record a seizure. At the time that a seizure happens, a nurse will inject a dye into his IV that highlights the area(s) in his brain where the seizure is happening. Once they do that, they have four hours to get him into the SPECT machine to capture the images of the dye in his brain. The hardest part is, once the nurse mixes the solution for the dye, we have just a six-hour window for Cam to have a seizure. They will only mix the solution once a day and it's pre-planned. If Cameron has a seizure in the seventh hour after the solution is mixed, it doesn't matter -- we have to wait until the next day when they can set the solution again. They told us they've had kids in the hospital from Monday through Friday because it just doesn't happen in those hours. Once he has a seizure, we can go home, so hopefully it happens quick and in that six-hour window. Luckily, the SPECT machine is free next week, so we'll be doing it sometime early next week -- likely starting Monday or Tuesday at CHaD. They're also scheduling the Vision Field Test and all of his pre-op "stuff" for while he's admitted next week. There are so many more things to discuss like, what the surgery entails, recovery and how we know if he's "seizure free". I guess I'll have a lot of time next week to type that all up!

At this point, we're looking at surgery in the last week of October. We are truly so appreciative of all the thoughts and prayers sent for Cam. Even though we feel like this has been going on forever, it's really just beginning. We'll find out tomorrow what day he will be admitted to start the EEG/SPECT scan, but for now, our house is entirely surrounded by water and it's still raining! GO PATRIOTS!

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