Friday, January 16, 2009

Update On Philip

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?

16 comments:

He And Me + 3 said...

Yes, we made it through another week. Praying for Philip and for you today. Have a restful weekend.
XO,
Mimi

annie kelleher said...

sending healing thoughts to both you and phillip... and warm hugs on this frigid friday...

Grace said...

Continued prayers for all of you my dear friend. I know it's all scary... but I also have faith that you and your family will figure out the balance you need. I'm focusing prayer on God to clearly show you the right path. Love you all... lots!

April said...

Praying for Phillip and for you!

misty said...

I continue to pray for Philip, you and your family. Thank you for sharing an update on him. I hope he is able to get some pain relief and feel better soon.That is such tough news and some very hard decisions to make.You are a strong lady,and I know God will guide you through. We are here for you, I wish there was more I could do. The one thing I can do is keep praying and sending support for you and your brave son.I hope your day goes well, you so deserve a good day. Hugs

Lisa said...

Amy - I am so so sorry that your son is going through this. I really can't imagine the heartache that you have to deal with everytime you receive a blow like that. I know it is so hard for me to simply watch my son get a shot at the doctors because I know he is in pain and hurting, but I can't imagine what you are going through as you watch Phillip. I think I know you pretty well and at this point you would probably do anything to have that pain taken away from him. I just want you to know that I am praying for you ever single day and I am asking God to lift you and Phillip up in prayer and allow you both some healing and comfort and right now some peace for those decisions that you and your hubby have to make when it comes to Phillip. I wish I could do more to help.

Love & Hugs,
Lisa

ixtapacheryl said...

Oh Amy - my heart goes out to you. Your plate is full indeed. I loved your phrase about when humans make plans God laughs ..... something like that Isn't that the truth - but for me when I don't hear God talking to me - I NEED to make plans. During those times I think God is busy with other people with more serious problems.

Does this stimulator stop the pain? It sounds very much like my mother's spinal cord implant which blocks the pain receptors in the brain.

Good luck at the doctor's today! Hopefully all the labs come back at acceptable levels and they can start the much needed treatments. My prayers are with you, Philip and your entire family.

bluesuede said...

I'm sending love and comfort your way.

Mrs4444 said...

Sounds complicated. And stressful. Breaks your heart, I'm sure. Go ahead and dump. I'll keep praying for you and your family.

Tink said...

You continue in my prayers and thoughts. I love that quote cuz my husband and I are "Dumb" and "Dumber" when we attempt at fixing things. Have a great weekend and happy Friday to you!

tara @ kidz said...

You are an amazing mother and downright amazing person. I hope you can get the medication balanced out correctly to get that boy out of pain! Best wishes with your appointments as well. God bless.

JANE said...

Whoa, that's a lot to ponder. I'm just praying something will come along that will bring him continual relief.
Hope you have a great weekend!

Maggie R said...

Dear Amy. ..
Prayers and love still coming your way for you and Phillip..
My favorite line is "Let Go.... Let God".....
He will take care of you...
God Bless
Love
((((hugs))))
Maggie

Charmaine said...

I can't imagine living on a daily basis with all of the decisions you must make for not only yourself and Phillip. I will continue to send prayers of healing for you and Phillip, prayers that you will be lead in the direction that God has for both of you. Sending loving hugs, because I know how much you like those :)

hjoy said...

I found your blog through the Kidz blog and just wanted to let you know we are praying for Philip.
God bless.

AmberP said...

The worst thing in the world is seeing your children in pain... I can't imagine what you are going through but you are an amazing mom and Philip is so very strong! I hope that this new treatment will help in the relief of his pain - so that he can regain his quality of life and that some of those pain meds can be decreased!
Hugs to you... I wish there were more I could do! I feel helpless way over here in Canada :(