Sunday, August 2, 2009

Detailed Update...

-9224-9221

To be perfectly honest I'm not even sure where to begin this update. We have so many thoughts spinning in our minds that it is sometimes difficult to explain anything in words that anyone can understand. I guess the best way of summing up our present situation is to say that Gavin has again reached a critical point in his is health. There are two ways to go from here -- things can either get a little better or things will get much worse and he will not be able to recover.

The main issues we are dealing with right now are this increase in severity of infection, his more severe response to infection and his central line access. We were all hoping that after Gavin's bowel removal that our life would change for the good, and initially it looked like Gavin had taken a huge turn for the better, but then these past two months he has been hit by multiple, multi bug infections. Right now we are trying to figure out what is exactly going on and what is causing the increase in infection. The first reason we know of is that Gavin's immune system has been declining over the past year. He spends much of the time being neutropenic, meaning that he is unable to fight any kind of infection. This is something that we can help thanks to the IVIG infusions we are wanting to start more frequently. The other obvious issue is that the small amount of jejunum and stomach that he has left is pretty much useless and often leaks bacteria into his bloodstream, which then attaches to his catheters. The last issue, which at the present moment is worrying Adam and I is Gavin's fascination with picking off his ostomy bag and giving himself and bath of bowel fluid and blood. We are trying out best to try to prevent these occurrences but Gavin is determined to defy all attempts to restrain him. Ostomy fluid bathing and compromised immune system is really and huge issue. S0 -- we are working on trying to find a way to ensure that Gavin is not a threat to himself.

Besides the infections we also have the issue of central line access. Basically when the time comes when they can no longer place a line we will have no choice but to be finished. That is enough information to scare the crap out of anyone. Gavin's chest wall is covered in scar tissue making placing a catheter increasingly difficult. The surgeon had a talk with me this week that literally shook my world -- the reality that Adam and I will have to choose at some point when we will say we are finished. We discussed other options that have been brought up in the past such as transplant but they are all quickly shot down as Gavin would never survive a transplant as are most intestinal transplant centers refusing to transplant a patient with the Mitochondrial diagnosis due to the poor outcome. Again -- simply heartbreaking.

So here we are. On Friday Gavin had his central line removed and they were able to successfully place a PICC line in his arm. Today I got word from the doctor that Gavin's PICC line is now infected with the bacteria that was on his CVL.

I'm not sure what else to say. We have a new plan to start Gavin on frequent IVIG infusions and to try to keep his levels above normal to help him fight infection, but this really will not be effective until we get him "clean." We have a plan to go down on Tuesday for blood and the IVIG and we are saying a prayer that we can treat this bacteria that traveled to the new line before the infection is to sticky.

So -- if I haven't lost you all, you are simply amazing. Yes, we are a little frazzled right now but I think we still have hope. Gavin can give anyone hope -- just one flash of his award winning grin and my mind is taken away from all things negative.

Thanks for your prayers and support.

42 comments:

Anonymous said...

Ask about a implanted port catheter, less infection then central and pic lines. Also ask thema about the antibiotic meropenum.
Your in our thoughts and prayers.

Kimberly said...

I'll keep praying!

Anonymous said...

Praying for peace and hope for you all! Praying for comfort for Gavin! We love you guys!

Anonymous said...

I am so, so very sorry that the news wasn't better.

I will continue to pray for your amazing little fighter, and for the rest of your family as well.

I cannot imagine what your family is going through, but I do know that no one could take care of that little boy better than you do.

Maureen

mandie said...

praying for you sweet boy!

ginger said...

I continue to pray for Gavin's health, your wisdom, & Maddie's heart (not sure how else to put it) in all of this. I never thought I would be so affected by someone I didn't know.

Paige said...

Praying for your sweet boy and your entire family!

Heather said...

Never give up that hope.Gavin is the very core of what hope is all about.Words escape me right now but hope never will.Love from California.

anna said...

still praying for you little gavin and family!

Steve Boyett said...

Praying for Gavin and the family

Anonymous said...

You guys are the amazing ones! We will certainly be praying w/ renewed fervor this week. Lots of love, Jeff & Debbie

The Cates Family - Sean, Chelle and Carter said...

We say a prayer each night for you dear Gavin. You, indeed, have the millionaire dollar smile which melts our hearts...please get better big boy. You are touching so many lives and continue to do so daily. May your mother and father gain rest of mind and soul tonight as we know their hearts are heavy (for quite some time). God bless you all,
The Cates Family
www.cartermcates.com

tripntwinmom said...

I will continue to pray for Gavin and your entire family. What a diffilcult time for all of you.

Thinking of you in Texas..

(((((HUGS))))))

Anonymous said...

As always you are in our thoughts and prayers. We love you.

Aunt Carol

Chelle Cates said...

I just wanted to say- you are always in our prayers and thoughts. Those 2 little smiles make my day everyday! sending love from Texas.

the Cates clan

Jodi R said...

Karen, I am so sorry for the not so good news. As always, we will continue to pray for Gavin and your family. His smile is priceless:) We are praying Gavin will continue to fight those nasty bugs! sending prayers and hugs (0)

Little Millie said...

I will continue to pray for your family. I am like Ginger, I never thought that I would be affected so much by someone I didn't know. I pray that you and the doctors will have wisdom to make the right decisions for Gavin's health.

Anonymous said...

We continue to pray for you all and for some resolution to this bacteria issue. God Bless you all.
Saballos family-CT

Jennifer said...

Oh. I don't know what else to say, except to echo the others & reassure you that so many of us are holding your family up in prayer.

Lindsey said...

My heart is breaking for you. I can't even begin to imagine all that you are feeling right now. We are praying for you daily and will continue to do so.

Wifeof1Momof4 said...

Thanks for the updates and I continue to pray for Gavin and for the whole family.

Lorra said...

Dear Jesus, Please lay your healing hands on sweet, baby Gavin and restore his little body. Rid his body of these infections and keep him comforted. Continue to give strength to the whole family and hold them in your loving arms. In Christ' Name. Amen

Shari said...

Oh Karen! My heart is breaking for you. I will continue lifting Gavin and your family up in prayer. Praying for comfort, peace, and grace as you have such difficult choices to make. Loving you from afar!

Anonymous said...

Karen & Adam: you guys are in our prayers. Hang in there. ~Moses'

Anonymous said...

I've been following your blog a long time and never posted - I am praying for Gavin and your whole family! His smile just brightens my day when I see new pics that you post of him and your daughter!

keeping all of you in my thoughts and prayers!

Kathy in Texas

Anonymous said...

I'm sorry. That's really all I know to say. I'm praying for y'all.

The Rowe Family said...

I'll be praying!!! Emily

Jill said...

Prayers from DE! I'm sorry to hear about the journey you are on and the very difficult decisions you must make for your amazing son!

Anonymous said...

I found your blog and Gavin's story by a message Travis Cottrell posted I believe on Facebook. Since that day, checking on Gavin has literally become part of my daily routine. There is something truly magical about his little smile and his big love filled eyes. God has his arms wrapped around your precious little boy, his sister, and his Mommy and Daddy. We will continue to pray for Gavin's health. He has touched our lives and we are so thankful you chose to share your journey, joys and struggles alike.

JayCee said...

Even though we have never met, I feel like I know your family through this blog. Thanks for sharing.....will continue praying!

Latte With Me said...

I have no words. I'm so sorry for everything all of you are going through.

Like everyone else, I will keep praying for all of you. I've been amazed at Gavin's will and strength and I'm not done being amazed by him!

Jessica said...

I'm so sorry to read this. My 3yr old daughter is currently TPN dependent and has a broviac in what is officially considered to be her "last" line spot (surgeon thinks we may have a few more ... but grim reality is we may not- not even one...)

I know how much of a terrible terrible stress this is to all of us, and my daughter's issues are not even close to the severity of Gavin's. My daughter does have some function in her gut, and so far hasn't had a single infection in her line (just unstoppable serious bacterial UTIs).

The situation you are describing is what all of her drs keep predicting for us in the future. I am praying for GOd to work in Gavin's body and clear this never-ending infection. And for your faith and courage.

Jessica
www.fromthebanksofjordan.blogspot.com

amy said...

just heartbreaking! i am praying for gavin to over come these bugs and for strength for your family.

evwmom said...

haven't been blogging on here for a while however you are all constantly in my thoughts. I continue to pray for Gavin. Wish I could do something for you all. Love and thought of you are here in Florida

Cindy Heintz said...

I understand ALL your thoughts!!!
Holding you soooo very tight in my thoughts and Prayers. Your so right...Gavin's SMILE just makes you melt and he is such a brave little fighter.
Always with you

Taria M. said...

I wish I had words to say to you... words that could put peace in your heart and give you knowledge of what is to come. I have been praying for you all, and will continue to. Your son amazes me!! May God draw you all closer to Him, and you find some comfort under His wings.

ISO (In search of) said...

Praying God's hand will be upon you and your family. Continued peace and comfort to you and your little guy.

Michelle said...

Strange thought... but have you considered using garlic? If he cannot have it internally, it can be put on his feet. There are scientific studies that show it kills almost ALL drug resistant bacteria (studies also show that it seems to work well in conjunction with antibiotics). Garlic boosts immunity, as well as killing bacteria. As well, can he have probiotics to increase the "good" bacteria in his body?

Baylee and Blair's page said...

Continuing to pray for little Gavin and your family. I can only imagine how all of this makes you feel. I know how much it can wear on you! Keep your head up and stay in prayer!

Hugs - Tiff

Anonymous said...

Karen and Adam,

Praying, praying, praying for your entire family...

Joy Rota

Loraaf said...

Praying, praying, praying!

Anonymous said...

Praying for you all and comfort for everyone!! 2 stories for you to read if you haven't about kids help from Neb Med Center. carepages/rylansworld and cotaforemersonw.com. Emerson is a mito kid who has been transplanted 2 times. Nebraska does do some of the higher riskier kids if you are considering transplant or even just management. Will keep praying God guides and watches over you!!