Monday, March 9, 2009

From Philip's CB today...Philip Update

We had a long night. Philip woke me up about 2 am and was hurting really bad. He had already taken his extended morphine and used his patch. So he took a extra dose of his other pain medication. He is so sweet. He kept saying I am so sorry that I woke you up.. Not that anyone likes to get up at 2 am but I will get up with Philip anytime day or night. He ended up staying up till about 6 am and finally slept for a few hours. Just not a great night .
We have a appt with the surgeon tomorrow. I guess we will make a final decision about what the next step should be. As I mentioned before the operation will be more complex for Philip due to the areas already having so much damage from previous surgeries before. The other issue is the base of the skull is where the skull has been worked on before when they dealt with the mass. I will hold on to to the knowledge that his Dr is wonderful and very skilled. And as always faith will help guide us which path is the right one. It has gotten us this far.
I have gotten some wonderful e-mails about Philip lately and our family.
I wanted to let you know that I am going to be starting something on my family blog that I will link here also for all of you. It will be some post about Philip when he was younger and his operations and milestones. It will show just what a blessing and miracle he is. I am very excited to share with all of you just how far he has come. It also will help explain how we have gotten to where we are today.
To answer another question I have been asked a few times this past few weeks. We just are not sure what the final answer will be with Philip and his left side. But we are not giving up. With him having the stroke on the right side. He needs to have as much control and use with his left side as possible. We are looking into second opinions at Duke and also John Hopkins.
Also the Mass in the brain stem is in a very bad place, While it needs to come out it could kill him to take it out. If you ask 1 Dr what they think, 5 say out, 5 say no. The problem is once you cut you can not UN cut. So for now we are praying and waiting. As our Neurosurgeon says one day he may have to play miracle worker but not today.
Last question I get often sent often that I will answer today...I have been asked if we have a lot of family support with the children and phone calls etc, from local family.
My family lives in S.C. Except my dad which I have no relationship with.
Jim's parents are wonderful and live near and help with the children. The help with taking the kids to school and make sure to check on how Philip is doing and how his appt went etc. They have been very helpful with Cole since I have had so many operations due to my cancer.
The rest of the family have families and jobs and stay quite busy with their own family.
So to answer your questions we have been blessed to learn to depend on ourselves as a family and Jim's parents. Maybe that was the lesson in all of this.
We have been blessed with my Sunday School class these past few months. Since I have been diagnosed with Cancer they have brought dinner on Tuesday nights. That has been such a nice blessing to us and means so much to us.
If you can think of Philip tomorrow for his appt. I will update and let you know what they decide. He is such a wonderful you man and deserves to be as healthy as possible.
Thank you all who post, email and call to check on Philip and myself. It means more then you know. We are so blessed.


Kristen said...

Thanks for taking the time to come by my blog.

I will be thinking of you and Philip tomorrow.

I look forward to seeing the pictures of him

Mari said...

I'm looking forward to your posts on Phillip. I'll be praying tomorrow.

April said...

Hi Amy~
You know that I will be in prayer for Philip tomorrow...and all the days to follow. May God Bless You and give you peace and comfort. I just visited his CB site and left him a few words of encouragement. He's a remarkable young man...and you're an amazing mom!!!

ixtapacheryl said...

Amy, all I can say is I pray daily for you and your family. I will pray especially hard tonight for a good outcome tomorrow.

With my husband having the tumor at the base of his skull the doctor said they could NOT operate because of where it is ..... I'll be very anxious to hear what they decide on Philip ...

Mommy of the Dynamic Duo said...

Both my kids are seen at Hopkins and are patients of Dr. Ben Carson who is a world renowned pediatric neurosurgeon. If you need his contact information please send me an e-mail!

Prudentia said...

Amy, we will be sure to say extra prayers for Philip tomorrow. Eli asks about him lots. When you hug the kids for us tonight, give him an extra one, ok?

Michelle Riggs said...

I will be praying for you all. I wish there was something I could do for you.

Amy B said...

World of dynamic duo..
Thanks for the comment. I have had a few wonderful email exchanges with Dr Ben Carson. He has been very helpful, honest and blunt...I like that in a DR. He was so very kind to talk with me considering Philip is not his patient. How impressive.
Thank you so much for your advice.
I am following up in many top hospitals and he is at one of the you know.
I hope your girls are doing well.

Amy B said...

Our talks through emails about our sweet children has done more for me these past few days then you will ever know. Thank you for allowing me to share my thoughts with you and you sharing how sweet Abby and you are doing today. Hugs to both of you..

Amy B said...

Thank you ALL for the comments today. I feel so calm..okay well calmer knowing you all will be thinking of Philip tomorrow. I am so thankful for each of you..

Denise said...

I will be praying for you all. I know you have some hard decisions to make. I am praying for wisdom for you, your husband, Philip and his doctors.

Christina said...

I came over from Mamarazzi... I will keep you and Philip in my thoughts.

misty said...

Amy,I will say extra prayers for Phillip and his appt.I will keep praying for him to get some much needed relief.He is such an brave young man and you are an awesome mom...God bless!

Anonymous said...

Thanks for coming by my blog.
We are very happy to have Milo home.
I'm new to your blog. Going to add you on twitter.
Is Phillip your son? I'm trying to understand whatss going on with him? If you need a prayer let me know! God is great, we just don't understand things sometimes.

noahandlylasmommi said...

I am praying for Phillip. Hugs!