Saturday, March 21, 2009

Philip CB Update and a Little more Venting...

As a mom you know it is never good when you get a knock on the bathroom door at 12:30 am and say Mom we need to talk..

Promise to not think harsh of me if I tell you a split second thought I had..I thought..I will stay in here and I will not have to hear what it is.

Now ..not that I did not want to know what was wrong..I just had one of these moments where what I did not know for a minute would not hurt or scare me for a minute.. all us moms know..they will keep talking through the door..Right?..

So the issue is...what I feared..major side effects from the weening off the meds. Shaking, seizures, severe pain...This started in the middle of the night last night and is a problem once again tonight.

Makes me nervous. We do have 4 doses of a medication to stop a serious seizure. But this would only used as we called a ambulance. It can cause some serious side effects including breathing issues.
I never want to use it...but there is a sense of Thank Goodness we have it.

We had a schedule for the first part of the surgery early next week. Thought I had everything worked out with my chemo treatment and Scan...then found out there was a issue with someone being with Cole that day. Reality set in that day..It was not pretty...Chemo, PET scan and CT scan worries, Jim's job worries with a lay off and most important Philip's major first step of surgery..
And I could not figure out how to make it work. Hence the I part of that. God knows what the plan is...and he has a reason for it not working out for that day.

I have a call in to the DR office for Philip to get everything switched around. Then I will re schedule my chemo and scans. They are working with us.
And I am calming down.

I guess as a parent you just have to know when you have done all you can do...This is a lesson God is trying to teach me everyday.

The odd thing was...when I found all this out I was walking out the door to chemo and was trying to figure everything out...and it hit me..I am ONE person with too many things something has to give. I ended up sitting on the couch crying for an hour and then saying...well it is what it is...I think that is what they call REALITY. And out the door I went to chemo and the day went on. Just the way they needed to.

And you know what...we are a family of 6 and we make it work. It may not be perfect or pretty...but we get it done. And really in the end..that is what counts.

So sometime hopefully next week we will have a plan for Philip's first stage of surgery.

Brain surgery we come..Spinal cord surgery #3 here we come.. We PRAY to have this the last of the operations.

Tomorrow is a new day and we are blessed to be able to be all together.


Juls said...

I'm praying....I wish I could help some way physically, but I am praying... I cannot imagine...

annie kelleher said...

oh my im hoping and praying for you all... xoxox... annie

ixtapacheryl said...

Oh Amy .... my heart really goes out to you. Not only are you a patient but you have to be a caretaker to Philip and your sweet husband. I can see why it can be overwhelming juggling all these balls in the air.

When I start to complain (silently in my head) I think of you and your difficulties. You have way more on your plate than I do - how dare I complain.

Sometimes it does us good to cry ... it's like a much needed rainfall to clear away all the debris that has built up over time. I find myself crying at the weirdest times and over nonsense issues. Then I just pull myself up by my boot straps and continue on.

God does have a plan and only time will tell what that is.

Hope said...

I'm sorry. I really admire your strength. You have faught so hard for Phillip while fighting for yourself as well. I think about you guys a lot.


eske said...

Well, you are just going to have to adopt me, become a family of seven, so I can help with the details................

bluesuede said...


I checked in as soon as my feet hit the floor. It takes a while to realize that one person cannot do everything. I know it took me a while to wrap may head around the fact that I am just one person and I can't be everything to everybody and do everything that everyone wants me to do. I have learned to make priorities. You just have to make a mental list and do what's most important first and then, move down the line. I'm glad that you have seemed to learn that at a younger age than I did.

I am so hoping and praying that things will be more peaceful for your family soon.

P.S. Just decided to copy what I wrote at CB.

April said...

Praying for all of you, my sweet friend. And remember...regardless of what you might think...YOU ARE STRONG!!! I see it every time I read one of your posts. Stronger than just about anyone I know! God Bless You!

Grace said...

You've got some great internet support... Good wishes, prayers and thoughts for a successful week. I'M sure that it will all work out, it usually does. Remember, I'm here for you.

Lifting Philip, you and rest of the family up Always.

jaded said...

Oh my, the grace you have shown in this post is mind and Philip have set a fine example of courage.