I wanted to give you some details about Philip's operation. He will be having two. One will be to place everything for a 10 day trail period to make sure he can tolerate the medications and the increase of fluid in the brain. Then he will have another operation to place everything permanent. We are waiting now for a call from the hospital for a date for the first date.
A few details about the operation that the Dr explained to us. They will be in the spine and the brain. One thing that could be a issue is the extra fluid from the medications going in the CSF area of the brain. Since Philip has a issue with the brain already and the ventricles and shunts..the extra fluid could be a problem. But for now we will go with a positive outlook. Okay for one quick sec let me say one negative...cause I can here..right? If the extra fluid from the meds is a issue...then the operation will not work and will have to be undone. So this is a area that is really important...Okay now I am back to the positive outlook...see how fast I went back to that?
The other issue is having foregin objects in his body. Philip already has antibody issues from having shunts and shunt infections. So we will need to find a balance to adding the new hardware. If it does get infected it would be a infection in the spine and the brain area which would mean the shunts would have to be dealt with including the dreaded hardware that is brain stem. I have to just say I hate the hardware in the brain stem..always have..always will.
Shunt infections are really bad and really scary . Philip came very close to dying not long ago from one. I have never been so scared in my whole life. Wanna know something? It changed me. It scared me. It made me really scared. It made me anxious and worried and just scared . Sometimes I still get that feeling. More often then I like to admit. I trust in God. he has been so faithful to his love for Philip. But I worry that his plan is going to be something that I just can not let me mine think about. That was hard to admit . But I am glad I did. It feels good to say it to someone.
And you guys are the best SOMEONES ever. Have I told you that lately?
Now there are some wonderful things about this whole operation..well not the operation but about the fact that he will have this done.
There are some new medications we can try to help Philip with his tone from his stroke. He has never been able to try this before because he has not had the pump. He also can use a new medication to try to help with the burning pain he has. Both of these are big pluses , and we are excited.
Getting to the point to do this operation has not been easy. The risk are many. But in truth we have gotten to a place of not knowing what else to do. I have full faith with the Dr. I also know that we did not jump into this without waiting , trying other options, and also praying for a clear path. So now we will move forward.
One thing I wanted to add is ..Philip will be weening off some of his meds. This will be a hard process for him. Not only his pain meds. But Philip uses some seizure meds to control his pain. He needs to be at a lower level for many of these meds before the operation. So during this time period we need to be aggressive with weening down . This can lead to some medical issues including pain and increase in seizures. I hope that this is not the case with Philip and this will go smooth .
I will let you know the minute we find out the dates for the operations.