I want to thank you all for the wonderful support with Philip. You know I do not know how else to put this...so I will just say...Philip is having more and more issues...I just feel like we are behind on things instead of a step ahead. Kind of hard to figure out a plan of action.
So speaking of plans of action..let me give the update from the big appt last week. It has taken me a long time to digest this and I still am not accepting this as the final word. I just am going to take a while for Jim and I to think and wait and see what the right path is. I so have to remind myself that...
WHEN MORTALS MAKE PLANS GOD LAUGHS....
This has been so true with many area of my fixing , planning, and deciding what we will do to fix things with Philip.
The bottom line is there is a serious issue going on with his left side. His right side is the one that had the stroke. So needless to say the pain is awful enough in the left side. But the increased weakness in the left side is the saddest and scariest thing that can happen right now. Well not really it could be worse BUT for today it seems bad enough. I know you moms understand what I mean.
Philip seems to have a central degenerative disorder...There is no cure for this. Just treatment. Right now his treatment has been very strong pain meds...steroids...and patches and some added seizure meds that can sometimes help...help with pain...not with the weakness or stop the condition.
I hate hate hate Philip being on such strong pain meds. It is not normal..it is not safe and it scares me for addition. I know we need a balance....pain vs safety. I need to be fair to him and know that he needs them and not resent that he needs them. Does this make sense?
So the option ...a deep brain stimulator. Doesn't that just sound scary. Well it is. It is to help control the pain. But for Philip it could be a miracle help with pain or it could cause a major problem. It would be places deep in the brain behind the base of the skull. Just a reminder he has the brain stem banana shape mass/cyst. He also had the left in old shunt Cather there from the operation that caused the stroke.
With the brain stimulator it would have a Cather..so the risk of infection is always high...and he has the shunt and the left over Cather.
So....we left the pain management Dr with that information and me having a headache and heartache. We decided to up the seizure medication. And for now Philip is taking a once a day strong morphine long acting pill. And as needed for breakthrough pain Perocett 10 mg.
That is why I was so concerned earlier this week...so many meds on board for pain and yet he was curled up in a ball ...
I know I have dumped this out here...and I am not sure it even makes sense...
But I am on my way out the door for a big medical day for me. I have some big labs due today and maybe some starting of treatments. So let me go get ready mentally and physically.
I hope you all have a very blessed day. Are you as thrilled that it is Friday as I am?