Tuesday, February 17, 2009

This Just Might Change Our Life...

Ok -- so Adam and I want to get everyone up to speed of all the crazy decisions we have been making over the past few months and even more so today. As I have explained before Gavin is very sick right now and has been getting sicker as the months are going by. This decline in health is mainly due to his failing bowels which are in failure due to the underlying Mitochondrial Disorder. Gavin's bowels have deteriorated so much that he is considered to be in end stage intestinal failure. From the study done last week we have learned that Gavin has no peristalsis, or movement, what so ever in the upper portion of his bowel and stomach. Because of this all the fluid that is normally present in the GI tract, which normally moves through and eventually becomes stool, in Gavin, is left to just sit there and rot. Because Gavin's bowel wall is so weak, soft and thin the bacteria that grows due to the lack of movement is then forced through the bowel wall into Gavin's blood stream causing him to be septic, which has been occurring on average, on a biweekly basis. Each of these infections has the potential to take our little boys life.

Because of the condition of his bowels and the realization that they will never heal but only get worse over time we have come to the point where they need to be removed. This is officially called an Enterectomy, the surgery that will be performed on Gavin sometime late this week. The plan is the cut out the entire small bowel, large bowel and colon, leaving a very small section of jejunum, which is the top of the small bowel, which will be brought out through Gavin's abdominal wall and will resemble an ostomy. The rectum will also be closed, in what they call a blind pouch. We need to keep a small portion of the small bowel in order for the liver and pancreas to drain. Gavin will still have a drainage bag coming from his stomach.

This surgery could change our entire life as we know it. This will not cure Gavin of his disease, which is degenerative and could cause other issues as time goes on. This surgery is a way to give Gavin and our family quality of life. This surgery will place Gavin's liver at great risk, but we are hoping that the Omegaven will help save his liver from failure. This surgery has a lot of promise but it also holds many risks. Adam and I have been very well educated on our decision and we both feel this is the way we need to go. We really have nothing to loose. Right now Gavin's life expectancy goes on a day by day basis and that is no way to live. We want our baby boy to be able to grow, thrive and develop all of which are being hindered by the frequent episodes of sepsis.

We thank you all in advance for you overwhelming support. I really hope you understand what a powerful impact your support and prayers have on our life. Right now we need you all more than ever. Even though we are very excited about the promise this surgery and next step has we are still very scared. God is an amazing God and we really believe this just might be the break our family needs.

40 comments:

Katie said...

I just found your blog tonight, you have a beautiful family. I will keep Gavin in my prayers!

Daniele Miesem said...

Holy cow!

I've been watching Gavin's story for some time, and frankly, I think this upcoming surgery sounds like a wonderful, clever way to give him a much better quality of life. Or to give all of you a much better quality of life!

Congratulations on making the decision, and I look forward to updates!

Anonymous said...

We'll keep praying for you all.
Debbie S. CT

Anonymous said...

Wow! Hoping, praying, and believing with you. Thankful for all the grace, wisdom, and peace God has given you so far. Jeff & Debbie

Heather said...

I did not read this entry with trepidation or fear for Gavin,rather I read this with an overwhelming sense of unbridled hope for Gavin.I can only imagine,actually I can't,what an extremely difficult but prayerful decision this was.We will continue,now more than ever,to support you and pray for you every single step of the way.May God's grace guide you and calm you during this next chapter and may you know that you are surrounded by the love of countless others who believe in you and believe in the strength and courage of the tiny but mighty Gavin.

Laura said...

Someone sent me the link to your blog tonight and to Gavin's story. I am sitting in the hospital tonight with my four year old daughter who also has mitochondrial disorder. I always appreciate finding other mothers out there telling the stories of what life is for them, for their kids and raising awareness for mitochondrial disease. I will be keeping Gavin and you, your family in my prayers and thoughts. Even though our kids share the same disease, the symptoms are likely vastly different and so I really have no idea what you are experiencing, though I know a little of what it is to have my faith shaken to the core over this. I will be praying.

dayna said...

i am praying for you and your entire family.. I know this is a decision that you didnt come to without great prayer.. God will be holding your baby boy in his hands as he always does.. i will pray for peace and strength for your entire family.

Anonymous said...

I know these decisions that you're constantly faced with - this one especially - are so difficult, but you know Gavin best and you always do right by him. You're giving him the best shot at life as an Owens..which means a life that is active, fun, imaginative, and blessed. You are giving him the gift of being a little boy every day. I will continue to pray...to hope...and to dream about what the future holds for your son!! :-)
kate.

kyna said...

may the peace of God guard your heart and mind. We are praying and have great hope for the future that God has for your family. Love you!

Anonymous said...

Our thoughts are with you. The best of luck in Gavin's upcoming surgery. I hope that this gives Gavin the quality of life he deserves.

Anonymous said...

We're praying for you guys (and the surgery team you will have). Look forward to seeing you guys at our next playdate :) Jessica

grey like snuffie said...

praying as He leads

Reesha said...

Miracles can happen every day, and I am praying for one for Gavin!!!!

brandiandboys said...

praying for gavin!!! the surgery sounds like such an answered prayer.

Shari said...
This comment has been removed by the author.
Shari said...

I hear HOPE in this blog entry! I know it brings trepidation and fear, but I am praying for the quality of life for Gavin and your family that you deserve. Praying for the medical team as they prepare for his OR trip this week! I love your family!

Beth said...

Oh, praying...praying....
I cannot imagine what you are feeling right now, but keep in mind that there are many praying for you. God is a Mighty God, He knows the plans for you all and they are good! Get some rest and find some peace in this....you are making an inportant decision to give Gavin a chance at life!!
Take care,
beth in colorado

smilingfaces said...

I admire how strong your family is and my heart hurts for you. I am hoping and praying that God will guide you in the direction you need to go; and he will give you the strength you need to make further decisions that are necessary. My thoughts and prayers are with you.
Micha

Anonymous said...

You are all in my thoughts and prayers.
I pray this surgery goes well

May the Lord grant you all peace, strength and faith. May his loving arms embrace you all and offer you comfort.

Em
from Australia

Victoria Strong said...

My family will be thinking of yours...and especially your beautiful little boy.

bryan said...

Prayers for Gavin, Madison, Karen, Adam, and all of the Doctor's and Nurses that may be a part of this life changing surgery! You are right, God is an AWESOME God!
Blessings...

Sarah Endy said...

Hi everyone! Believing and praying for a miracle for Gavin! Know you are all in our prayers, and we love you! Sarah

3saints said...

Oh you sweet Momma...I'll be praying for you and your whole family. Your an amazing Mom, and Gavin is so blessed to have you.

Hugs
Kate

Anonymous said...

http://roehfamily.blogspot.com/

Heather Nicole said...

Gavin, my Nana Hamm loved children more than anything else in the world. She is an angel in heaven now and I have asked her to keep watch over you during your surgery. I know you'll do just fine :) Love, Heather

april carlisle said...

keeping you all in my prayers and thought. through him anything is possible. Keep walking with him and remember to let him carry you through these diffucult moments.

Lisa and Michael said...

We will be praying for you guys and for Gavin's successful surgery... keep us updated. We love you so much, praying for a miracle! - The Walks

Stephen and Nikki said...

Praying for you and your precious son.

Anonymous said...

Am lifting you all up in prayer...praying for you all while sitting through my dentist appointment...praying for you while cleaning up cat vomit...praying for you constantly. You are both amazing parents and warriors. God's blessings and protection especially this coming week.

joan's blessings said...

Karen, I am so glad that we got to meet you and the kids in person. I have been praying for all of you for a long time now...I had also been praying that when we are at dupont that we could meet one of "our kids". I am praying for this surgery and always for gavin...tell madison happy late birthday, we were almost bd twins, my bd was the 15th. She is an awesome big sister!
joan & hannah grace

TinkerAndPo said...

May God, in whatever form you believe, hold you and Gavin close and keep him safe. So much love going out to you right now...

~ Lisa @ AbidingThere~ said...

Prayer and support - you got it!

Jade said...

Honey...you are amazing to me. You and your whole family. The grace you are showing in such a violent storm...

Every ounce of my being is praying and rooting for your little guy and your family.

Reagan Leigh said...

Sounds like a plan! I know you must be both relieved and scared to have finally made this important decision, but it really sounds like it's what is best for Gavin. Continuing to send lots and lots of prayers your way!
Tera

Wendy said...

Sending prayers to all involved in Gavins upcoming surgery. I know God will take care of your family during this difficult time. Stay strong for each other.

Spiky Zora Jones said...

Jade sent me...my prayers tonight will be for Gavin and the rest of your family.

And I do believe.

hugs, strength and my best wishes i'm sending your way.

xoxox

Michelle said...

Just came across your blog and I will be lifting your little one up in prayer. I hope the surgery brings relief to your little one.

Anonymous said...

Don't think I have ever been excited to hear about such an extensive surgery on a child, but it makes sense, and I am excited for the hope I hear in your words and the potential for Gavin's new life! This plus the Omegaven may be just what everyone has been praying for, even though we didn't know it at the time. Glad there is a positive outlook for a change! Eileen

jennifer said...

I have not been reading for a few days and just found this post tonight. I know you and Adam have made the right decision for your son. I realize that the decision you all make for him are difficult-and I will probably never know just how difficult they are. But the thing that stood out most when I was reading is the word QUALITY. What does any of us really have if we don't have quality? Whatever gives Gavin quality of life and gives your family quality time together will always be a good thing. I will be praying for Gavin's pain and discomfort at this time, his doctors skill, his upcoming surgery and recovery, and peace and serenity for your family. I may not know the right words to say to even begin to touch your lives, but just know that there are many people supporting you, praying for you and willing to help HOWEVER they can. Myself included. Us long distance supporters are more than willing to be sounding boards for the bad times, cheerleaders for the good times and intercessors in between! If you think it will help, a private email is always welcome.

The Zirkles said...

I haven't checked on Gavin in a couple days and boy did I miss alot! :) I will definitely be praying this week...praying for a successful surgery, speedy healing and His precious peace that passes all understanding!