The MRI that we had done on Thursday wasn't consistent with an arachnoid cyst like we thought it was. It's still fluid,so it's not a tumor-like mass. I'll try to explain it as best I can, but bare with me. It's about to get complicated. :) I drew this picture quickly while at work. I realize it's small and difficult to read, but it can just be an illustration to look back to.
Normally CSF stays inside the arachnoid membrane, surrounding the brain. With Graham, for unknown reasons, the CSF is on both sides of the membrane. It doesn't appear that the membrane has created a pocket filled with CSF, which would be an arachnoid cyst. But somehow the CSF is leaking into the dura space as well. All of that fluid is significantly pushing his brain off to the left. It truly is a miracle that he isn't compromised from all of that pressure. I look at him, and I'm just amazed and what a happy, seemingly healthy boy he is. Looking from the outside, I never would have guessed/known.What all the ends up meaning, is Graham is going to need a shunt from the outside of his brain, down to his abdomen to drain all the fluid. He might only need it for a few months, or he could need it for the rest of his life. There's no way to tell at this point.
I'm bummed. I really didn't want a shunt. Like, REALLY didn't want one. I have to keep reminding myself that the shunts I see are for different reasons, on sicker kids, and complications don't always happen. They wouldn't keep doing shunts if they weren't successful MOST of the time. So this is what I'm working on accepting.
Throughout this whole process, I have never once feared for Graham's future, I have always felt/known that he will be fine. It needs to be fixed and he will be fine. I was hoping for a different kind of fix, but regardless, the outcome will be the same. I know it will. The Lord will take care of my son. I have no doubts. That doesn't mean I've embraced the shunt, or that I won't be anxious for surgery. It doesn't even guarantee that he won't have any complications. But in the grand scheme of things, I know that he will be okay.
Dr Kestle wants to show Graham's MRI to a few of his colleagues, get second opinions and make sure they have the best course of action for surgery. I appreciate this more than I can say. I'm grateful that he is humble enough to ask for help when he may need it. It gives me great faith and confidence in his ability to help my son. I should know the consensus on Wednesday afternoon, and hopefully we will schedule a surgery date as well.
I'm ready for all of the waiting to be over. I'm ready to have the nightmare of surgery and the hospital recovery just a horrible memory. I wish I could just *poof* to future time in Graham's life. But since that's not the point of this life, to skip the hard stuff, we'll just deal with what we're given and be grateful for his overall health and temperament.
Thank you for the continued prayers and overall support. Keep the prayers coming, they can do nothing but good for my son.
3 comments:
Thank you for all that information. It helps a lot. I'm sorry for this huge disappointment in the solution of this situation. I am strenghten by your faith and additude. It will be all well. I am praying constantly.
I guess some answers are better than no answers, and I am anxious for you guys to have a set plan in place, as I know you are too. Hang in there on the waiting, I know it must be torture. Let us know when surgery is scheduled, and what we can do to help.
Love you guys!
Ian has had a shunt since he was a month old. It sounds like Graham has simular drainage issues that Ian had. Ian has never had any problems with the shunt. It is believed that is not working right now, but there is no need to take it out at this time since he has had it all of his life. He has not needed the shunt for years. Doctors know so much more now and can do so much more. Our thoughts and prayers are with you and your family. Sounds like you have a great doctor.
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