Tuesday, September 4, 2012

One Down, One to Go

One surgery down, one more to go.  This has been a very long day, and by the way our little fighter is acting, we know that we are also in for a very long night.  Luckily we have family here to help us and we also have the seemingly endless support of our incredible network of family and friends.

They ended up having to put arm immobilizers on Will to keep him from pulling out any of his lines.  He wakes extremely agitated and is having bouts of nausea and vomiting.  The good news is the grids are placed, and we are one step closer to recovery.  Everything is going according to plan, including what has been discovered on the EEG grid placement.

The team placed about 100 electrodes on his brain, and so far, the data seems to be showing exactly what we expected, although he is having even more spiking and abnormal activity than the doctors expected - about 1 spike per second.  Will's neurologist described what he saw on the EEG in Will's left parietal and occipital lobes as "a whole lot of nastiness."  This is confirmation to us that we are doing the right thing, and we have come to the right place.  By the end of Thursday they will know how much of his brain they want to remove, and we fully expect that the surgery will go forward on Friday.

We spent last night at the Ronald McDonald House, and are doing our best to get some rest there when we can in the coming days. It really is an amazing organization whose mission is to help families that are traveling out of town for their child's medical treatment. We were very happy and privileged to be there. Last night, Will was his usual self - all smiles and giggles, which helped our spirits.  It was hard to be upset when looking at that happy little face.  Nonetheless, there was a pit in our stomachs as we mustered big smiles while he was being a goofball in our room, knowing what awaited him first thing in this morning.


  1. Thoughts and prayers with you and your extended family (friend of Andy's)....

  2. Thoughts and prayers coming your way (friend of Uncle Dan and Aunt Jen)

  3. What a strong, courageous, and loving family little Will has. Thoughts and prayers for you and your family. (and hugs by way of Jen)

  4. Jen is doing a great job of garnering lots of extra prayers for you.

  5. Thinking of you and praying for all of you. Wishing extra hard on our wish lanterns.(Tory)

  6. You and your amazing son are in my prayers. I have just read Will's entire blog and am so amazed at how strong your family is. I hope this is the miracle that he deserves and that you are looking for (friend of Katy Fallon)