Friday, September 7, 2012

Our Little Warrior

Precious Will
It has been a very long week and we still have a long way to go before this is over, but we are getting closer.  Surgery will be at 8:30 on Friday morning and is likely to last about 6 hours.

Yesterday was a big day in this process.  The doctors attempted to map Will's motor function by stimulating the electrodes in Will's brain one at a time and watching for movement.  Since Tuesday, they have been gathering data to determine what area of his brain needs to be removed.  However, they needed to identify exactly where Will's motor function is located to know that the resection will not eliminate his ability to walk or move his right side.

Once all of the data was gathered, we had a meeting with Will's team of doctors in the afternoon.  Listening to them talk about their plan for the surgery, it is evident that they are very optimistic about the chances of a brighter future for Will.  As awful as the grid placement has been, the data that it has provided is remarkable.  We found out that Will has almost certainly been having daily seizures since November.  Since the grids were placed, he has had between ten and fifteen seizures per day.  However, the seizures are coming from an area of his brain that is far enough removed from his motor cortex that there are absolutely no visible signs of the seizures.  This is actually a good thing, because it means that the doctors should be able to remove the abnormal tissue, without impacting his motor skills.  The seizures are coming from only one distinct area - the parietal and occipital lobes - and this is what the doctors will remove.  There is no abnormal activity coming from the remaining areas of his brain, which is a wonderful thing.

We are VERY comfortable with the surgical plan, and extremely confident in the team of doctors that will be collaborating for this surgery.  Without question, we have come to the right place.

Will is still continuing to be a little warrior.  There have been times when it takes three to four people just to hold him down.  On Thursday, he suddenly reached up and pulled the entire bandage right off of his head.  We gasped and jumped to stop him but it was too late.  In the end, none of wires were pulled and he was able to get rewrapped with a fresh, lighter wrap which made him much happier.

After our meeting with the doctors, they agreed to disconnect the wires from Will's head. He still has the wires coming out of his brain, but they are no longer connected to anything which means he can finally sit up. This has made him considerably less miserable than before.  He perked up a bit after that, and we have been able to see glimpses of our Will again.  He even ate a little, which was wonderful as he is going to need all the strength he can muster to get through his next surgery.  He finished it off with a few sips of a milkshake, which we all agreed is the best thing we could have given him before his next brain surgery.

We will continue to update throughout the next surgery.  We are so appreciative and humbled by the outpouring of support that we are receiving from places near and far.  Thank you to all who are continuing to pray for our little Buster Beans.

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