Friday, March 13, 2009

Philip's Operation...odds and ends

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.

14 comments:

bluesuede said...

Thanks for the update. I just checked a few minutes ago and it wasn't there, so I must be sending you ESP messages as my mother used to say. Scary thought that your brain and mine might be communicating on a different level. lol

Amy B said...

Oh you know we work on the same brain waves and yes my dear friend..it is scary...huh? Love you and you love me..just admit it..ha.
Now when will you fly here ..when ? I would for you..

bluesuede said...

Ok, you are right, I admit it. I do love you, but I've still got this thing about flying. Ha!

Vickie said...

Know that you guys are always in my prayers.

Charmaine said...

Thanks for the update on what is going on with Philip, that is alot of serious decisions to make. I am like you; I too have a very active imagination and I think I would be having many of the same thoughts you have, but I think any mother would have those "what if" thoughts too. But it is at those times we need to lean harder unto the Lord, to rest in his arms and ask for assurance,strength and guidance...he will never lead us on the wrong path...sometimes it is not the path we would choose, and for me sometimes that is a scary thought...but then it is back to leaning onto God...Now that your decisions are made we have direction for our prayers.

April said...

We so appreciate the update...we're here for you, Amy...and will continue to be!

misty said...

Thanks for the update. Thoughts and prayers continue for Philip,you and your family. Keep holding onto your faith and hope, God will see you through all this. We will keep pulling for you all..take care!

McCrakensx4 said...

praying that everything goes well. take care of you!

Jules said...

I wish I could snap my fingers for you and make everything good for you & Philip! Since I can't do that, you will be in my thoughts & prayers.

Take care! ;0)

Shannon said...

It's so hard to have to weigh risk vs. reward. Before my surgery everyrhing was about percents. "There's a 90% chance of this" or "There could be a 50% chance of that." You get the drift. It really felt like everything was about weighing some % against another. It was so emotionally exhausting. Then before my surgery in church when they prayed over me the pastor said "Jesus, it is so wonderful to know that you are in this 100%, no matter what." Wow, what a relief to finally have a 100% of something and that something be Jesus. I just cried with relief when I heard that.

It's so hard to make decisions that you feel unqualified to make. You know the decision I had to make about my valve was torture. What to choose? Why did I have to choose. I'm not God. I don't know what's best. So yeah, you have to weigh risk vs reward. And then just try to rest in knowing that HE is in it 100%.

Love you sweet friend.

Queenie Jeannie said...

I am following and praying for your family hun!! Please vent and share as you feel you need/want to!! OK? The people who matter don't care, and the people who care, don't matter!

You're so brave. I would be out of my mind with worry. We'll all just take it one step at a time, praying all the way and see how it all unfolds. HUGS!!!

Florida Girl said...

Oh Amy.. I can't imagine what you are going through right now. I would have those "what if" feelings too. But you are amazing in your trust in God. That is all He asks us to do. He'll do the rest. I admire you. Keep us posted. xoxo Jess

Denise K. said...

I am new to your blog and am not familiar with all the things your family is going through, but I do want to let you know that I will keep you all in my prayers for peace in this journey you are on...Sending lots of love, Denise :-)

bronzeboy said...

Amy - Prayers are still going out for the Phillip, you and the family!