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Aaron Shust Partners with OneVerse.org

Friday, September 17, 2010

Who will save him from this body of death?

Thanks be to God through Jesus Christ our Lord!

So sorry that I have not blogged an update since Monday. Many of you follow me on twitter and you have been keeping up with my plethora of updates there, and your responses have brought encouragement to Sarah and I. I cannot thank you enough.

The nutshell, if I can do that, is this. Nicky has what is called Eosinophilic Esophagitis. There is a strong chance the eosinophil cells are also in his stomach and potentially his small intestine. He has been unable to keep most foods down for close to 3 months and unable to keep anything (anything) down since last Friday. He has been on an IV since Sunday evening (5 nights ago) and has been in the hospital since then with Sarah and some the best doctors we could hope for.

Yesterday, a feeding tube was inserted through his nose all the way to his small intestine because all 8 special formulas had been rejected orally. Which means thrown up. He rejected his first 0.5 ounce of formula #8 (which he had kept down the longest) through the feeding tube after about 20 minutes I believe. But the few ounces they gave him last night (directly to the intestine) has remained down.

Problem number 2: He aspirates nearly every time he swallows food or liquid, which means it goes into his lungs. He also aspirated some of the bile that he was expelling from his intestines.

Problem 3. Allergies. He has a level 3 allergy to gluten. A level 4 allergy to soy, wheat and barley and a level 5 allergy to eggs, milk and all nuts. Sarah had a salad last night with nuts on it, kiss Nicky's head an hour later and he had a reaction. A level 5 allergy involves discoloration and anaphylactic shock.

That's where we are. We can pray specifically for his healing now. Thank you for joining us in praying for our little baby boy. Sarah and I feel strongly that God wants me to stay on the road for now and continue to sing His praises with you. So I find myself in Bakersfield, California, but my heart is with my family and I pray for Nicky's healing, my wife's strength and Daniel's peace and patience as he stays with dear friends.

Community, praying for us and caring for us, is essential, we can't do this alone. And when we feel alone, we remember Emmanuel. God with us.

25 comments:

Ivy said...

Wow, Aaron. This is the first I'm learning about this since I'm a new follower of you on Twitter and now your blog. Wow. The strength of you two and your little one.

Lots of prayer going up! God is in control!!

Cindy said...

My thoughts and prayers are with Nicky, Sarah, you, and all who love him. I am also keeping the medical staff in my prayers. I know how agonizing this is for you. May God provide the strength and assurance you each need at this time.

ScW said...

man, I am crying right now. My family will definitely be praying. Our son has both peanut and other mild food allergies as well as having type 1 diabetes. So we've spent some time in hospitals... but obviously not the same. Breaks my heart.

Rubens said...

I believe that God will cure your son! And you will testify His Power and Glory!

Kim V. said...

Still praying for healing of Nicky's little body. I love the picture of him smiling in the shower. Kids are so precious and resilient. May God grant you peace, strength and healing.
Kim

Myrna said...

My heart breaks for your family. I will continue to keep Nicky in my prayers.

Melody Joy King said...

Aaron, I hurt, cry, and pray with you. I admire you and Sarah for your complete relience on God through this. I have had some physical difficulty for the past 3 years. To be honest, I just want it to be over. God has helped me realize recently that this is the path He has for me to walk for now. I am so thankful that He has walked with me EVERY step of the way, and taugh me awesome lessons about His mercy, and faithfulness. I have learned to count 25 blessings each day. It helps me keep a positive perspective, and realize how incredibly blessed my life truly is. Come what may, I know that my HOPE endures and that nothing can take away my promise and hope of a home in heaveb with JESUS forever. Thanks for your ministry of music and encouragement. I pray God's richeset blessing, grace, healing and peace on you and yours! :0)

"The LORD has done great things for us, and we are filled with joy"
Psalm 126:3

baylormum said...

I have goosebumps. And tears. Don't mean to sound cliche, but kids ARE resilient. And God is over all you. Never ceasing. Never sleeping. Always with you, as are your fans & friends. I have appreciated every tweet update. Even though you can't see my tweets back, I know Dan Gross has been helping me out so you see them. I can't imagine how hard it is to not be there! Yo have such great support surrounding you on Hope Restored. And that is what you are working in personally. Restoring hope. God will restore hope & health. Your faith is inspiring.

Won't make it to Kennewick next Sunday. Other obligations & I don't want to drive down alone, although you & my husband could really exchange some interesting stories, for sure! And the Steelers are 1-0. That's a start.

You are showing all of us how deep you have to reach sometimes. Even when you don't have the strength. Hugs & Prayers. Your friend! Baylormum!!

Megan said...

Just wanted you to know that Nicky & your family is in our prayers. He looks like such a sweetie (love his pacifier!).

We will continue praying that he gets some much-needed nourishment soon!

Lindsay said...

I can only begin to imagine what you are going though! I was diagnosed with Eosinophilic Gastroenteritis (EGE) when I was 20 years old. I'm 28 now, but I *distinctly* remember spending three months unable to keep anything down (orally) and the doctors spending that long trying to figure it out. It took multiple EGDs (endoscopy) to figure it out. I still have flare-ups, but occasional prednisone and a gluten-free diet have kept me a while lot healthier.

Remembering what my family went through --even with a sick 20-year-old-- I continue to keep you in my prayers!! If you need ANYthing, or just want any hints from someone who has been there (somewhat), PLEASE don't hesitate to email me!! Lindsay@hafproject.org.

Lou Ann Wilmoth said...

I was completely healed from a simalar disease. I was 37 & had to have a J tube placed into my small intestines for almost 5 years! But praise God I no longer need the feeding tube & I am able to eat most foods! My pray is for your little one to receive a complete healing to his body! Praise GOD for all of His GRACE, lOVE, & MERCY!

Aislynn said...

WOW! I think that is an appropriate word. First, your wife. She has to be an incredible God-driven woman to do without you. You are one lucky man. I will pray for her peace, patience, and endurance. Second, you. Your faith (along with Sarah's) is mind blowing. My husband and I just sat her looking at each other thinking how you certainly have a heart for the Lord. Your family will be in our prayers. May the Lord continue to give you strength through this time.
God bless you and yours.
Aislynn and Reson Holt

erikbledsoe said...

Bro, you don't know me, but I'm an independent artist who works with OneVerse. I've been praying for your tour for quite some time. My son is 4 months old and I can hardly stand to be away from him for just the weekends I'm out! I can't imagine how you are feeling but I pray that all feelings of fear, loneliness, hurt and pain will melt into peace that is unexplainable and beyond reason. Our Father loves us more than we love our sons. We will trust Him.

He Is Greater,

Erik

Virginia's Mommy said...

Praying for your sweet little son!

Chris Squires said...

Your talk about clarity & trust during the concert in Bakersfield spoke volumes to me. Thank you for ministering to us. Praying for your son, but PLEASE go home to be with him & your wife.

bluedaisy said...

To you who speak to thousands weekly and minister to thousands more daily, may God our Heavenly Father sustain you and lift you up in His Almighty Peace and comfort your heart as you lean wholly on Him. He holds your precious boy in His hand and loves you all so tremendously. We will be praying for you from Rockford,IL and for the Drs that God has working for Nicky. We will pray for Godly wisdom for you and your beautiful wife as you listen to the doctors and are advocates for Nicky. Praise to the One True God who can heal all through the Mighty Power of His Hand. eHugs and Love to you and your family

Margaret said...

I will remember your precious little boy in my prayers. Believe he will be healed by the great healer. Your songs brought me comfort last night in Bakersfield and I am glad I hung out to meet you and learn about your little boy so that I can spread the word about your families need for prayer. VBF will have you in their prayers.

Brandon & Brandi said...

A friend directed me to your blog after she read your latest update. My husband and I are big fans of your music, and we are also the proud parents of a 3 year old son who was diagnosed with EE/Eos at 15 months old. He lives on Elecare formula, given by G tube. It was a year long struggle to find out what was going on with him, but since his diagnosis he has been thriving. We will keep you and your family in our prayers. EE is tough to deal with, but in my experience once you know what you are dealing with in terms of the allergies and formula, it gets easier.

Beck said...

In my distress I called to the LORD;
I called out to my God. From his temple he heard my voice; my cry came to his ears...He parted the heavens and came down; dark clouds were under his feet. He mounted the cherubim and flew; he soared on the wings of the wind...He reached down from on high and took hold of me;
he drew me out of deep waters,
2 Samuel 22:7,10-11,17. I pray that you all experience the swift, powerful, loving response of our true Parent in the midst of your need!

Whitney said...

Wow! Just found your blog - had no idea how completely Satan was attacking one family after another in the CCM industry right now (been following Bowen Hammit's progress). Please take encouragement as MANY can relate to the food allergy problems. Most of my family has food allergies, tho I'm the worst. We have banned all nut products from our life as my DD also has a level 5 allergy to all nuts, and among others, I have a level 5 to shellfish - which means I can't even kiss my DH for a week after he eats sushi. The wide range, ever increasing rxns, and lack of concern on other ppl's parts cause ongoing anxiety for us. I can't imagine all of that on top the EE. If you are able to get that under control, check out FAAN and peanutfreeplanet.com (yes they cater to multiple food allergies).

That said, your wife is INCREDIBLE. As a SAHM of three, I know I wouldn't be able to handle that emotionally. Sarah is such a huge blessing from God for your family! Praise Jesus! WOW. We will pray diligently for your family, your wife, your son, ..... may you see God use this and not to have to wait til eternity.

I just want to hug all three of you! Please let us know is there is ANYTHING specific we can do to encourage or help you.

sunshinemama said...

I am encouraged by your faith and your wife's. Our 5 year old son is allergic to wheat, (gluten), nuts, eggs, milk, chicken, turkey and beef. I just wanted to say not to the level you are at but I definitely can relate to some of your challenges. May God give you and your family the strength to endure and your son be strengthened and your wife, you and the doctors know all they can do to care for him and that the Lord give you all His wisdom in this. In Jesus Name! Amen.

Jon Kuhl said...

Saw a link to your blog on K-Love and clicked, just because I am a fan. I had no idea you were going through this. I want to reach out to you because I am part of a support group for parents of kids with food allergies called Child Allergy Network of Wisconsin (www.canofwi.org). If you are new to food allergies it can be overwhelming, I would be blessed to be able to offer you and your wife advice and support. I also have tons of recipes if your wife is interested - they are all milk, egg & peanut/nut free, just need to sub in gluten-free items in some of them (I'm about to launch a website www.gourmetallergymom.com). I also posted a bunch of articles on facebook, feel free to look me up (Tara Kuhl). I will be praying for you and your little one without ceasing. May the great Physician lay His healing hands on Nicky and bring him comfort, peace and good health. Take care!

an Eternal Poet said...

Aaron, and Sarah.. This poem came this morning as I prayed for some friends who have just lost their first child, to miscarriage. As I was on FB tonight, I read about your child, and the struggles you have been facing.. Please know my prayers are going up for your little man, and for you both. I pray this poem of healing over you tonight.. May you find His peace in your difficult situation..
He is with you!
karen H.

Through it all His love prevails

Through your pain, or sorrows deep

In His Presence we find our rest

In our God, we find His promises to always keep


Yes , our God is always there

He comes to meet us in our pain

and when life comes, and goes, where we feel alone

it's there, our God cries out, " Dear Child, I know your Name"...


Just come to me, with tears of hurt

come bring them to ME, to hang on tight

When your tomorrows ache from pain so real

It's here,God says, " I'll hold you, day and night."..

BelindaConnects said...

Your posting made me cry so much. Not out of pity because I know that's not what you and Aaron want, but of shame. Most of use have nothing to complain about -- EVER!

I will pray for Aaron. Thank you for posting. God bless.

Michelle said...

A friend of mine told me about your blog today. I am embarrassed to say that your name is unfamiliar to me but I have heard some of your music on Christian radio when I googled your name online. I have 4 biological sons and 3 foster siblings (hoping to adopt) each with special needs including feeding difficulties. The baby has EE and GERD and I know to a small degree some of what you are going through. May Jesus bless your family. May he bring help healing and answers. Comfort and support. Praise him for being emmanuel God is with us.