Monday, November 2, 2009

Monday Update...

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This morning Gavin was showing some signs of improvement.  After addition Albumin and lasix last night his swelling seemed to go down a little bit.  He was a little more alert and even watched tv for a short amount of time before falling back asleep.  This afternoon however he wasn't looking so great.  Throughout the day his third spacing or swelling came back with a vengeance.  I hardly recognize my little boy.  His skin is so stretched it looks painful.


Early this evening they rewired a new line into Gavin's groin as they didn't think he has stable enough to endure a new broviac placement.  He did well in the OR and they managed to use the least amount of sedation in order to prevent intubation with the fear that they would not be able to extubate him.  Tonight he will be receiving blood and more lasix, again to try to pull the massive amounts of fluid out of his skin.

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We are going home tomorrow.  I guess I'm happy but it's a bitter sweet time.  I still have hope but it's so hard to hang on to that hope when our doctors are preparing us for the worst, which seems like it is becoming more and more reality.  Today was a difficult day emotionally.  One hour I was a crying fool and the next I felt so detached from the situation.  I guess that's all normal.


It was so amazing to watch Madison and Gavin have some time together.  If I could go back and change one thing it would be to have allowed Madi to have more interaction with Gavin.  I plan on making up for some lost time and giving her some really special time with him.  There is still hope.  If he can get over this respiratory hump then we will be back to our original plan and taking him home with his last line and just waiting until be got an infection we could not treat and then peacefully letting him go.  Our plan is now all messed up and Im just praying things will quiet down once we get him home.


After all home is the best place to heal.

30 comments:

Lisa Marie said...

It's beautiful seeing Gavin with his big sister... I'm so glad they had that time together. I think home, and time with her will bring healing. You are all in our constant thoughts and prayers. God is holding you so close right now!
We love you, Lisa and Michael

kate. said...

Oh, Karen. You deserve a good cry. To so many people you are the strongest, bravest woman they've ever *met* - including me. It's okay to lose it - you have most definitely earned it. The pictures tonight of Madison with her brother broke my heart. That little girl is one big beating heart for Gavin. I know this will be hard for her, but remember...you have blessed her with sooooooooo many amazing memories. Your children have had more experiences and joyful moments than most children do in their lifetime. You and Adam are amazing parents. I'm so sorry. It shouldn't have to be this way and you shouldn't have to lose your beautiful son. It's not fair. I'm so sorry.
xoxoxo

Kristina said...

I found your site through Kate a while back and have been following/praying for Gavin. We are at DuPont tonight as our daughter had surgery today. We stopped at the chapel this morning and I said a special pray for him and your family. If I can do anything at all for you tonight, please let me know. We are in 3C north, room 10. Please let me know if there is anything at all I could do tonight for you. We will leave tomorrow morning, as I think you are also hoping to leave then. I will say some more specific prayers tonight for you.
Kristina

abxmomof3 said...

Adam, Karen, Madison and Gavin,

I have been following your story for awhile but this is my first post to your blog. I am so happy you will be going home tomorrow and I hope home is just what Gavin needs. I wish I lived closer so that I would be able to do something for you and your family. My thoghts and prayers are with you.

Vickie Heydenreich

Diane said...

Our hearts are just breaking for you, and I know there's little we can say, but we are praying with a vengeance against this disease and what you have been robbed of - that God will restore abundantly what has been stolen from you all.

We love you so much, even though we've never met in person, and will continue to fight for you as best we can.

Baylee and Blair's page said...

It's so wonderful that Madison and Gavin have special time together! I will continue to pray for healing and peace for your family.

BIG hugs - Tiffany

JayCee said...

Praying for home, sweet, home.

Sandra said...

You are an amazing mommy, your faith is amazing!!!!! Thinking of you.. and praying you all get to go home and have time together, and some peace for Gavin...

lots of love sent to you all...xoxo

mandie said...

my prayer for you, Karen, is that you lean into God. i pray that He surrounds you with that peace that surpasses all understanding. regardless of the outcome, may you not become bitter with God. just know that you are being held up by the prayers of many of God's people. you are loved. thank you for sharing your precious family with us.

Lynne said...

Karen,

I am a friend of Jill Heintz. I have followed your blog and loving story of your beautiful son (and family) for a long time. I continue to pray for you all. My heart goes out to you. I'm sure Ally is one of the many angels who is wrapping her love around you all. I continue to pray for God's will and peace for you. Both Gavin and Madi have brought so many smiles to complete strangers. May you feel the love surrounding you.

Lynne (Pittsburgh)

Chelle said...

It is so beautiful to see Maddie with Gavin. What an amazing young lady you have raised. Your courage and strength always amaze me. Please know we are praying for you guys and you never leave my thoughts these days.
love always,
Chelle

therextras said...

Crying to detachment is normal. While you should not ignore yourself I hope you don't feel a need for a lot of self-analysis.

Their time together...not easy to measure the benefits, but I believe in the benefits.

Barbara

Tiffani said...

What a gift it will be to rest at home and heal there and love there and pray there...

Know that our family here in GA is doing our best to support you from afar with many many prayers and well wishes...

Thanks for the update.

Tiffani

Anonymous said...

I was thinking of Gavin constantly today! My heart is aching for you guys! I hate the fact that such a young boy can feel so much pain! I pray for peace and healing for you, your family, and Gavin! I think you guys being at home will give Gavin such peace. Give him lots of hugs and kisses! God will guide you through this Karen.
-Amy O'Connor
Gilbertsville, Pa

carrie-anne said...

as always you are an amazing mommy and daddy to your gorgeous babies! praying for comfort and peace among the many things we pray for. our hearts are filled everyday.

Reesha said...

Sending wishes of clarity, hope, peacefulness and good health to go home.

Hang in there!

Those pictures are so very sweet. And don't have any regrets you have quite a few wonderful pics of those two together!

Anonymous said...

I just started reading your blog recently. I am heartbroken...I am praying that God will heal Gavin...I have a three year old son and today I cried with you just thinking of "what if that was my son" going through my mind. I want you to know that you are all constantly on my mind. I've been checking your blog all day. I will continue to lift you all up in prayer.
Jennifer in CA

Heather said...

A siblings love .. unconditional.She has watched and learned to love with compassion and grace.She has learned from the best.Sending you strength Karen and praying for home.

Amy Bucher said...

Sending so many prayers to you all...

God's peace,

Amy
mom of ^^Arden^^ (NBIV, forever 3), Grayson (almost 3) and pending Bucher #3

Misty Rice said...

I don't know that I could be as strong as you seem to be. I admire that in you, but hurt for you so much to even have to be in such a place to try to be so strong.

I am sorry. No words can make things better...... I almost feel frustrated and angry for you. It just isn't fair, but I know we don't have the right to ask...for we are not promised another day, and for that I know I am thankful... but I can't imagine as a parent to know what possibly lies ahead and the thought of accepting it.

I am praying for you and your family and that little beautiful boy.

Your daughter is so beautiful and you can see the love and her natural nurturing way for Gavin. She touching him so sweetly and gentle. And the look in her face is of a women much older than her... and sweet wise and old soul she appears to be in these photos.

I think it is a great idea to give her special moments and time with her little brother. My son is 8 and my daughter 18 months, and I love more than anything to see how they truly love each other. A bond so different and so unlike anything else.

She is older now and this will be a big hole in her life (and is) too.

I wish I lived closer, I would love to come and take family photos of all 4 of you. Maybe you can get pictures taken of all 4 of you in your new house.

Big hugs mommy.

Julie Kreisman said...

I've watch little Gavin for almost 1 1/2 years. I can not even try to understand what you are going thru. Know that there are many people praying for you and your family. The lord may take your son from you but he will never take the menories. He will ALWAYS be with you and some day you will meet again. Enjoy the time you have with Gavin.

Amen

Rachael said...

Sending love to you... {{{hugs}}}

Renee Little said...

Dearest Karen and family.

God is using you all in powerful ways across the United States and world.

Gavin has touched my heart in a deep and powerful way.

I am grateful for you and your openness to share.

We are praying BIG and MIGHTY prayers for Gavin and your journey home.

Renee from sunny California

Jen said...

what darling pictures of the 2 of them.. I too found myself telling my son to "just let her rest" or "don't get her stirred up" and that is one of the major things I regret.. he just wanted to set by and hold her hand.. I think its wonderful to let them have some special time together..she needs that too..

There are no comforting words, there is no magic potion to make you be less upset, to heal your wounded heart.. so instead, we will continue to pray for Gavin and for your sweet family..

Anonymous said...

I have read your blog for a year now. I have never posted before but wanted to let you know that people everywhere are praying for you all and helping to hold up your burden to the Lord. You and Adam have been the strongest parents through all of this and I know you will continue to be. I pray that you all are home and Gavin is doing better. I know we serve an awesome God. I pray for you all and you seem to be constantly on my mind. Funny how never meeting someone you could do that but the only explanation I have is we are part of the body of Christ!
Love and prayers -
Amy Jonesborough, TN

Heidi said...

(((Karen))) Thanks for sharing these wonderful pictures of Madi and Gavin, they are so precious. She's one amazing little girl with such a big heart, you can see how much love she has for her brother.

Im praying so hard for all of you and have such high hopes that Gavin will get through this...then he can see what a wonderful home he has waiting for him. Every emotion you have right now is perfectly normal, how does a parent go through this...Im so sorry, its so unfair, its such a cruel disease...I wish I lived closer, I wish I could do something to help. I'll continue to pray for healing tonight and hope youll be home with your boy soon.

Heidi and Jack 6, Mito

Erin said...

I am praying for sweet Gavin. I heard of him through another child's site. Praying God will heal this sweet baby's body.

HUGS!!

Erin
www.caringbridge.org/visit/braydenthomas1

Jennifer said...

So thankful you've all made it home again safely! Here's to a quiet, peaceful & restful night for all in the Owens household. I'm sure you all need it.

Anonymous said...

Praying so hard for your beautiful boy and whole family.

dstar2 said...

I just wanted to stop by and let you know I am thinking of you and praying for you all. God Bless you.

Donna/Angel_wings