Sunday, October 30, 2011

Countdown to 11.3.11

Will stuffing his face with Cheerios
We are counting down the days until Will's surgery.  It is so difficult to believe that in just a few short days we are going to be removing approximately 10% of our little Buster's brain.  We have been very busy getting everything lined up with Will's doctors for the surgery, and making sure that all of our plans are set.  Most important, we have been trying to spend as much time as we can with our two boys before the big day.

Will is now completely off of the Ketogenic diet.  We started by gradually reducing his ratio over a 2 week time period, and then slowly began introducing "normal" food.  We gave him a few McDonald's french fries, and looked it up in KetoCalculator to see how far off his ratio it was.  For months, every bite we put into Will's mouth was at a ratio of 4:1 (4 grams of fat to every 1 gram of everything else) or 3:1.  We were shocked to see that a McDonald's french fry has a ratio of only 0.4:1...meaning that every meal we have been giving Will while on the diet had TEN times the fat of a McDonald's french fry! Yikes.

Will can now eat anything he wants, and he can have as much as he wants.  Surprisingly, Will became so used to his limited meal selection that all of this new food with texture and taste is very different to him. He is refusing some things that we thought he would definitely eat.  We took him out for ice cream as a special treat, and he spit it right out.  We got him a smoothie instead which he loved, and he even had fun sharing it with his brother.

Will enjoying his treat
As part of Will's pre-surgical appointments, we met with his neurosurgeon, who went over the course of the surgery in detail. We were pleasantly surprised to find out that they want to remove less brain than we originally thought. After they reviewed all of his MRI images in detail (by the day of the surgery he will have had 4), they are optimistic that they may be able to spare a portion of Will's left temporal lobe that appears to be healthy brain tissue called the hippocampus.  The hippocampus plays a key role in short term memory, a function that is obviously important for daily life, so we were thrilled to hear that they might not have to remove it.

Will is going to need to have a blood transfusion during the surgery, and his surgical team asked for 2 units of blood.  He is too little to bank his own blood, and unfortunately neither of us were a match, as Will has a fairly rare blood type.  Luckily, Aunt Faith and Aunt Mary are both a match for his blood type and have already had their blood taken by the Red Cross and it is ready to go.  We think it might be a sign of all the prayers being lifted up for Will that he is getting the blood of FAITH and MARY.  Thank you both so much, and thank you to everyone who was willing to donate but was not a match!

Will is now off of all drugs except for Keppra. We are happy with this because Keppra is not a severe drug like many of the others that he has taken, and it has very little negative side effects for Will.  If the surgery works, he will likely need to remain on this as a "maintenance medication" for one year following his surgery, to prevent a relapse of seizures.  We are prepared to put Will back on the Ketogenic Diet after surgery if we have to, but Will's doctors are optimistic that if the surgery is successful we won't need to.

Will has a lot of pre-surgical testing ahead of him this week, including an additional MRI.  Right now he is fighting a cold that we are hopeful will pass soon so surgery will not need to be postponed.  The actual surgery on Thursday (November 3) is most likely going to be first thing in the morning, so we will need to report to the Clinic at around 5:30 AM. They expect that the surgery will last approximately 5-6 hours.  He will stay in intensive care for about 2-3 day, followed by 3-5 days in the pediatric epilepsy monitoring unit, followed by up to 3 weeks of rehab.  We won't know until after surgery what type of rehab therapy Will is going to need, which might require a longer hospital stay, although we are hoping that we will be able to be able to do it on an outpatient basis.

Sharing with Jack
All of this for what his doctors estimate is a 60%-70% chance of success.  That is the most difficult part in all of this...we don't even know if it is going to work.  A year ago, we would have never imagined that we would be surgically removing a portion of little Will's brain, but we feel that we owe it to him to give him the best chance at a normal life as possible.  We are so thankful that he is too young to know what is about to happen to him.  He doesn't know to be scared.  Unfortunately for us as parents, we do, and we are terrified.  Please pray extra hard this week for our little Buster Beans that the surgery will work, and pray that we can maintain the presence of mind we are going to need to get through this.

Just a note for those of you who receive email subscriptions to this blog - the blog emails can only be scheduled to go out once a day, and we plan on trying to post updates throughout the day on Thursday.  If you want to see those updates when we post them, you will need to either check the site manually from time to time, or else friend request Kelly on Facebook as we will try post the updates there.

1 comment:

  1. My family and I will be saying many prayers for Will and the entire family!