Tuesday, September 27, 2011

Decisions, Decisions

Last week, we made the most difficult decision of our lives, but it was a choice that we had to make.  Our little Buster Beans is going to have the left temporal lobe of his brain removed on November 3rd, at the Cleveland Clinic.

Deciding to have surgery was a very tough decision.  Deciding what part of his brain to remove was agonizing.  We want to make sure enough is removed to stop the seizures, but we also know that once brain matter is removed, you can't put it back.  The current plan is that during the surgery, they will do continuous brain monitoring, and if it appears necessary, there is a chance that the surgeon may also have to remove the left parietal and occipital lobes as well. This would likely be done either the same day or in an additional surgery a few days later.  We are praying that won't be necessary, as removal of the occipital lobe means that they will have to sever Will's optic nerve, permanently reducing his field of vision by 50% in both eyes.  Stopping the spasms is, unquestionably, our number one priority, but we are hoping to spare his vision if at all possible.

We are still traveling next week to Johns Hopkins in Baltimore for another opinion, and are hoping to get additional answers as to how much of Will's brain should be removed, but we really don't feel that it is in Will's best interest to postpone the surgery any longer.  His seizures have been pretty bad lately, both in duration and in intensity, and his development still remains stagnant.  Nothing we try seems to work, and it is absolutely heartbreaking.  We started weaning Depakote last week, and we will also wean him off of the Ketogenic diet prior to surgery so that we don't have to worry about his blood sugar and can give him IV fluids during surgery.  We are really looking forward to seeing him eat a big meal to his heart's content-he will be so happy!

As you can imagine, we have been completely overwhelmed trying to make arrangements and prepare ourselves for what lies ahead.  We were told that Will will likely spend 5-7 days in the hospital following surgery, followed by up to 3 weeks in the hospital for rehabilitation and therapy.  The most critical time period for his brain and skull to heal is the first 6 weeks, so Kelly is going to be taking a leave of absence to care for him until he has recovered.  Thankfully, we have a lot of family and friends who will be there to help support our family during this difficult time.

We honestly have no idea how we are going to get through this.  His happy little spirit has been incredible.  No matter what he is going through, whatever treatment we have made the decision to put him on, he still smiles at us like we are his entire world.  For now, we are just cherishing and kissing his little blonde curls as much as we possibly can.

1 comment:

  1. Will they place a grid? It really helps to determin what needs to be removed. It sucks, trust me, but preserving as much as possible and having that detailed EEG is so reassuring.