Monday, March 30, 2009

Life at home...

Yesterday I was telling Adam about how I wish somehow in my mind I could just resolve that our life will never change, we will always be in and out of the hospital and we will never find quiet.  If I could keep in this mindset it would make my life a lot easier -- I wouldn't be so stressed every time a possible admission is in the air.  Truth is -- I'm not in that mind set.  I still dream of living a normal life, I still have glimpses of my little boy made whole, and no matter how many times we are admitted to the hospital the words "bring him in" still sends chills down my spine.

Things with Gavin are crazy right now -- I feel like his little body is unraveling.  Gavin has been running fevers for the past 48 hours, cultures were drawn and so we wait.  The biggest issue right now is his blood sugar.  The past few nights he has been running over 500 when on his TPN.  You read that right -- five freakin' hundred.  If things do not calm down we will have to have an endocrinology/diabetes work up later this week.  

He still is struggling with his energy levels.  Sometimes he does ok and is pretty alert but other times I have to do that look real close is he still breathing maneuver.  He is getting better and does seem to be making progress everyday.   He still is not peeing, which in mind mind is one of the biggest issues I would like to see resolved.

For this week please pray that we can get Gavin's blood sugars under control and try to figure out how he can go from one extreme (hypoglycemia) to the other.  

This boy likes to keep things busy!


twinkle said...

As I read through your post I kept wondering what Bible character you most identify with. Seems to me, your life is a lot like David's when he was on the run from Saul.
Saul wanted to destroy David, and God allowed the pursuit. And in that pursuit, David cried out to God over and over. And he wrote some of the most beautiful words I've ever read. Praising God. Can you imagine?!?
This "THING" your son has is what pursues you. And your survival instinct is so strong that you keep escaping the inevitable defeat.
You are NOT God. You are human, and a mommy on top of that. I pray that you will look hard at David and find something in his life that helps you deal with the monster your family deals with every day...this disease.
I live with an extreme sensitivity to sunlight. It breaks me out in hives in seconds. I've prayed for miracle after miracle...and sometimes God answers me with one. I have to live life a little on the unusual side. And sometimes I just bawl. The sun hurts me! But I have had a "life-lesson" of strength, faith and compassion that I would never have learned with an easier life.
I count my blessings every day and I struggle for the enemy not to STEAL my JOY!
If we could only see on the other side of this life what God has planned for our reward...I know it will be so worth it...I just know it!
May you find comfort in God's Word and hold on tight to God until He blesses you.
You are doing the very best you can for Gavin. The rest is up to God. Only God.

Faith said...

Karen, you are amazing and an inspiration to me every time I read your posts. I will continue to pray for Gavin and your whole family, that God would bring healing to him and peace to your family. I went to church last night and the pastor was teaching on the book of Job. It could not have been a more perfect lesson for me to hear. The teaching (and the rest in a whole series on Job) is available to listen to online, let me know if you'd like the link.

Tiffani said...

I pray that even though you feel the things around you are unraveling that YOU feel together and whole in the arms of you try to find rest in those precious arms...

"I want sit at your feet, drink from the cup in your hand, lay back against you and breathe...feel your heartbeat...this love is so deep, it's more than I can stand, I melt in your peace, it's overwhelming"
--Kari Jobe (The More I Seek You)

...praying this for you today!

kyna said...

praying for your sweet you!

Mia said...

What you go through daily, hourly, each second of every day is...well, honestly, I can't find the appropriate word for it. The feelings you're having are right. They're right for you, they're right for anyone in a similar situation. It's like a nightmare that you wish you could just wake up from.

I've wished I could wake up from our own brand of nightmare every day for 6 years. We haven't had the medical complications that you's our own brand. Everyone's weight is different, everyone's weight is their own, but it's still a weight that must be carried somehow.

I am finding that I may be slowly coming to the final complete acceptance that what I felt is a nightmare, what needs to be fixed, isn't a dream, but is what is - and what is our life and it's okay. That's OUR life.

I think you'll come to your own in your own time. I've only been reading for a little time, but you and your family have an amazing strength. I know that each day you don't know where you'll find even more within the depths of your soul that feels spent...but you will.

I don't want to leave a link on your site, that's not why I leave this comment, but if you have time, please read my "article" on The Acceptance of Grief under articles on my site. Again, no link...just if you want to.

You're doing what you can, when you can and as you need to. Just know that. I hope and pray for you, Gavin, your family.

ginger said...

Continuing to pray in FL...

Tina said...

Continuing to pray in Saskatchewan, Canada.

Becky said...

We're praying for little Gavin's sugar levels to go way down-- 500 is a very scary number! We're rejoicing that you're home and that it can be enjoyable for you all no matter the time length! You're all doing an awesome job!!