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Aaron Shust Partners with OneVerse.org

Tuesday, September 21, 2010

The New Normal...for a while

Nicky and Sarah came home from the hospital Saturday afternoon. The Home Health Team met them at home to help Sarah understand how to best care for Nicky. He has a little back pack that holds the pump and the special formula that runs through his nose directly to his small intestine. Again, bypassing his stomach. Which is why he is always hungry. I was video chatting with them last night before bed and saw Nicky in the background trying to open the fridge (see pictures below.) Very sad. The good news is that his body is receiving nourishment, even if he doesn't feel it.
His tube started to slip out yesterday, Sarah had made a mark on the tube by his nose, and found it behind his ear. So they are scheduling to go in and fix it. If the tube is too high, it could drain formula to his stomach...which he may expel. He is on a steroid and a reflux medicine. Evidently EE is quite painful and the doctor said he probably has been in pain since birth. Which would explain his incredibly high pain tolerance. He busted his finger yesterday and didn't even flinch.

Some of you have encouraged me to go home. I wish I were just on a personal retreat and could leave to go be with my family, but Sarah and I have talked about this together and what she has told me is, "When I need you to come home, I will tell you to get home, but I am able to care for our family."

She is an amazing woman of God. We also are blessed to have many GREAT friends who have cared for Daniel and Sarah as she cares for Nick. Sarah told me, "Satan would love nothing more than for you to leave the road and the ministry that God has called you to." And yes, my first ministry is to my family, and right now, I'm doing my best to earn a living for them. I have an opportunity to live a life of faith in God's sovereignty and trust in His perfect plan before my audience every night as I praise Him for who He is, regardless of my circumstances. This is a trial for us, and while my being home would provide emotional support for us all, my wife relies on God for her stability and He sustains her. Bottom line, we have prayed through tears, including my staying out or coming home and we believe that right now, God would have me remain on the road.

But I'm counting down the days ;)

36 comments:

Holly Caroline said...

I completely respect and honour you for your decision to be on the road. Sarah is right, Satan wants nothing more than for you to pack up and go home. You never know whose life will be changed because of your step of faith.

Praying for little nicky. Thank you for the updates!

Aislynn said...

You two are awesome! Following God's plan for your lives will only benefit you in the end, and you already know that. =)

Marci said...

"And now just as you trusted God to save you, trust Him, too, for each day's problems; live in vital union with Him. Let your roots grow down into Him and draw up nourishment from Him. See that you go on growing in the Lord, and become strong and vigorous in the truth you were taught. Let your life overflow with joy and thanksgiving for all He has done." Colossians 2:6-7 Living Bible
You family is in my prayers.

Angela said...

It's funny how quickly you fall into your new normal. My son also has eosinophilic esophagitis as well as autism. He has a g-tube and so easily it became second nature to our family. We're actually quite thankful for it as he's getting the nourishment he needs painfree!! I will pray that your son's EE is able to be well controlled with his steroids (Flovent? Budenoside?) and he's able to be a happy little guy again.

Mary Lou said...

Aaron,
So glad to hear things are "better" for Nicky but we are still praying for healing in his body.
Ps 46:1-2 , whole chapter is great to remind us even if the mountains move God is in control. Your world has been shaken but God is sufficient for you, Sarah and Nicky.
Praying God will honor your faithfulness to serve Him through your music. Praying He will be your comfort and refuge.
Love ya.

DeDe said...

I publish our church's weekly pray calendar. A dear senior lady called me this morning asking me to place Nikky on the pray calendar. She doesn't follow contemporary Christian music so she did not make the connection. I shared with her how I had been blessed by your music. We will be praying weekly for Nikky and your family. God bless!

Heather said...

Our daughter has had health issues for the last 6 1/2 years. My husband works a job out of town so I totally understand the struggle between wanting your husband home and knowing that you can also do it! What people need to understand that I am sure you and your wife already know is that you are not out on a vacation...you are out providing for your family! There is just something about us moms who have children with health struggles...God gives us a little extra strength to plow through the issues life throws at us! Your wife is stronger than she thinks and you all will plow through this! The Word tells us that we are MORE than conquerers, that "greater is HE that is in me than he that is in the world." Praying for peace for you and your family; that you know that you are doing the right thing by being out and providing and that she is an execeptional mom with grace and power greater than even she realizes! Blessings to you all, Heather Harrington Norman, OK

Jill Tracey said...

Aaron, the 91.5 WCIC family is praying for you, Nicky, and the whole family. No one else can tell you what's best for your fam right now. It's between you, your wife, and God. And, somebody's gotta make an income, right? I'm sure it must be hard being away. Much love to you and yours!

njholder76 said...

I'm sure you must have discussed this, but is mother's milk available? Would what the mom have ingested cause a reaction? The Lord is with you.

Jill Angel said...

God bless you. I understand how hard it is to see your child in pain. I pray God continues to give you and Sarah strength to get through this difficult time. I also pray that God will heal your son so he can become strong, healthy, and share his testimonial of God to future generations.

You've got a strong little boy there.
God bless,
Jill

Elaine for Mars Hill Revisited said...

Lord continue to be with Sarah,Aaron, Daniel and Nicky. Thank you that Sarah fully relies on you for her strength. Thank you that Aaron is staying commited to the call you have placed on his life. Bless them for their obedience. Continue to bring strength and healing for Nicky's precious body that You created! Be with Daniel as he watches and learns what you are accomplishing through those around him. In Jesus' name, Amen

Andrea said...

Praying for you all. What a tough tough road. God's so much bigger than this trial, praying for His strength and guidance for you both.

Suzanne - Daughter of the King said...

All I can do is pray with you - I cannot imagine this road that your family is walking. We are praying for you as I know so many other people are. And we join our voices and hearts with those that are coming before the Throne of Grace in your time of need for Nicky and each of you as you walk this out.

May God empower Sarah to continue to walk in faith and love and trust in our Lord and Savior. God bless you and I pray the Lord continues to strengthen all of you: Isaiah 35:3-4 "Strengthen the feeble hands, steady the knees that give way; say to those with fearful hearts,
"Be strong, do not fear;
your God will come..."

He is able to come and fight against all that forms against you, your wife, your children and your land - In Jesus' Name and the Power of the Holy Spirit of God.

God bless you!

Shay said...

As a mother of 2 children, both with feeding issues I see so much of my children and our life in this blog. I hope only the best for your Nicky.

Heather said...

I will be praying for your little guy. My 2 year old daughter has a feeding tube and specialized formula. We also see doctors in Pittsburgh, at Children's Hospital. I would be more than happy to talk to your wife if she has any questions or needs support. We've been doing this for over a year now, and finding other people who are going through the same thing is invaluable.

Heather
hmeyer626 @ yahoo . com

Tunafish said...

Praying =) Jesus loves you! and uses all ill for His good.

chatmac07 said...

I am praying for your family. I have a friend, Sara, that is in Pittsburgh now with her son Cooper. They have been there almost five months now I believe, while her other three children and husband have been back in TX trying to keep their family going. I have forwarded your blog info to her. I don't know if your son is still in the hospital or not, but because of her son's condition being a little similar, she knows several families with children with EE and knows information on EE specialists here in the US. I would love to pass along any information she has if you and your wife would like. Having a special needs little boy myself, you can never have enough friends praying. God has truly guided my husband and I every step of the way no matter if it was finding a specialist or just trusting Him to help us make the decisions we have needed to make to give Zachary the best life possible. It is a road that I never knew I could travel or would have to, but with God...ALL things are possible!!! Never give up hope, keep the faith and remember, there are lots of prayers going up for Nicky and your family. God bless you all!!!
Charity

Kim V. said...

I pray that God will continue to sustain both you and Sarah as you go through this trial. I also pray for complete healing for your little boy.
Kim

Christine said...

Aaron, more prayer warriors have joined your battle... A year ago you did a concert in Madison, WI and met a young cancer patient named Clare and some of her family. You were such a blessing to them. I shared your blog with her dad, Bart, and he wanted to let you know they are praying for you, Sarah, Nicky, and Daniel. Here is a pic that may help you recall the meeting. http://www.facebook.com/?ref=home#!/photo.php?pid=423674&id=1620861493&ref=fbx_album May
God Bless you and heal Nicky soon!

captivesouls said...

Aaron, my name is Shelley Hunden, and my son, Bill, also has EE. He is almost 4 and has some safe foods and drinks/g-tube feed elecare or splash. He was born with many other health problems as well, but the EE is the one we deal with daily. His brother, AJ (5yrs), also has GI problems, that as of now the doctors have not been able to ID. He also has a g-tube and is on a limited food diet and elecare/splash. (for more info on the boys, see the group "pray for AJ and Bill" on facebook)

I completely understand your feelings! My husband and I have made many difficult decissions, because of the boys health. I am a pastor, but currently, I am not serving in a professional sense. We are blessed to have 2 little miracles! Bill, according to medicine should not be here. I am excited to see the amazing things God has for him and our family.

I know you don't know me, I wanted your family to know you will make it through this! Someday, I am hopeful their will be a cure for this horrible disease. I have met an amazing group of people on facebook, who are always there and so helpful as we understand the different phases of EGID. Also www.apfed.org and www.cured.com are wonderful recources.

I feel like I could write so much more, but I know your mind is racing through all of this. Please know, my family is here and praying for your crew! If you or Sarah want to chat, or whatever my email is: captivesouls@hotmail.com and I'm on facebook under Shelley Lynn Warf Hunden. I really do understand... stay strong, and as I remind myself often... FIND THE JOY!
<><SheL.

Jennifer said...

I have 2 boys with EE. It's not pretty.

Emily said...

What a sweet little boy you have! You are so blessed, but I'm sure you know that. I am touched by your story and have shared it with my parents, the ultimate prayer warriors! So watch out....good things are about to happen :) God has also blessed you with an amazing wife. I only pray that if I were in a similar situation, that I would be able to rely on God they way that she is.

I can't imagine what it must be like to see your child suffer, my heart goes out to you both. May God wrap his arms around your family, especially Nicky. And may He work through the doctors and nurses to bring his EE under control.

Big hugs and God bless!!!!

Laura E said...

Wow, what a beautiful testimony you have, even though it's painful to be living that testimony right now. You hit the nail on the head when you say that Satan would love you to leave the ministry. But what a difficult position for you! I'll be praying for you and your family and that you can be together very soon. Your wife is so strong and brave and faithful.

Denise said...

Aaron, I am a mom to a 12 year old son, Daniel, who has EG. EG is the pretty much the same as EE, except it also involves another part of the gastrointestinal system, the stomach and small intestine in his case. We have been going through tests and hospital visits and everything that this disease entails going on 4 years now. I am truly sorry that your son and your family is going through this. It is so draining on a family physically, emotionally, financially, and spiritually. We are very blessed that at this time, Daniel is able to drink the formula orally and does not require a tube, but the possibility for a tube is always there, according to his doctors. We take one day at a time, and thank God for even the smallest blessings. Please know that your family is in our prayers and that there is a wealth of knowledge, support, and prayer warriors out there for you and your family. Continue to do what you are doing, which is trusting in God to lead you in everything and for your son's health and healing. Take one day at a time, and try to have peace in knowing how many people are lifting you up in prayer. God bless you!
Denise Petree

Mary said...

We are praying for little Nicky. How exhausting for you, as parents. But you know God IS in control and you can completely put your trust in His will. Hang in there and do what needs to be done day by day.

K.E.'s EOS fight said...

My son also suffers from this horrible disorder
I HATE it
But we have a huge support system thru APFED - AMerican Partnership for Eosinophilic Disorders www.apfed.org
My son just got results back from biopsy today and he failed miserably
More food will be taken away

Sorry you are in our eos world
But we help each other
If you friend me on facebook I can hook you up with more EOS families


http://keseosfight.blogspot.com/
http://www.caringbridge.org/visit/kevaughnedson
http://www.carepages.com/carepages/KE
http://www.youtube.com/watch?v=g2hLlIws_Yo
http://www.licjournal.com/pages/full_story/push?article...
http://www.timesnewsweekly.com/news/2010-05-20/Photo_Ga...
http://www.irishemigrant.com/ie/go.asp?p=story&storyID=...

Cindi said...

So sorry to hear NIcky is so sick. My son has eosinophilic gastroenteritis (esophagus, stomach, intestine affected, he's 10) and we know what you're going through. A friend heard your story on the Fish (95.5), a Cleveland station. Her son has EE and EC...I missed that broadcast.
Please check out www.apfed.org
It's a non-profit organization dedicated to families and patients with eosinophilic disorders. Education, research, support and advocacy. I've volunteered for them for the last 8 years... The patient education conferences are well worth attending, lots of information and meeting other families that "get it" that your kid can't eat.
Prayers for Nicky...
The two formulas typically used to treat EE are Neocate and EleCare... He's likely vomiting due to inflammation from previous food exposure - don't take it necessarily as a reaction to the formula. He will likely tolerate them in time when the inflammation clears.
Hugs and prayers headed your way.

Ellen said...

I am a pediatrician in Kansas, and I am sorry you are having to deal with this incredibly painful condition! I pray God will give your beautiful son complete healing. I also pray that He will give you strength to deal with this situation, no matter what the outcome!

Elizabeth said...

Hey Shusts!My daughter has EE and we've struggled a lot with allergies, asthma, etc. She is on adult doses of reflux and allergy medicine daily (she's 4). I will say when she was on the steroid it made her reflux worse and that's why we went up a dose.

Also, we used a SPECIAL "formula" we purchased through the pharmacy called ELECARE. It was the ONLY THING she could KEEP DOWN. It was a miracle for us~very expensive but amazing. It's an amino acid based medical food. Also, NEOCATE is the equivalent but a different brand. Hang in there.

Sometimes its so exhausting hearing "I'm so sorry for your child" when you're just trying to keep up the strength. When you're having a hard day and have no energy to fight... just stand... and know that's ok. May God bless you and keep you. May God make his face to shine upon you and be gracious unto you. May He lift up his countenance upon you and give you all strength.

Annie Chellah.T said...

Your songs have been a great encouragement to me. Today only I heard about Nick's illness through K-LOVE. I'd pray for Nick. May God be glorified through Him

Steiner said...

Hey Shust, sick family is so tough to deal with. Julie was diagnosed with MS in February and so we've been wrestling that out with God...all the things my head knows about God's goodness and His healing power are trying to make their tortured way down to my heart.

It sounds like Christ is bearing you guys up in his arms. We're praying he keeps doing so and you keep feeling like He is. We're praying for you and Nicky and Sarah.
Phil S.

Mary said...

What a strong family you have! It's easy to see your faith through all of this. I will keep your little Nicky and ALL of you in my prayers through these difficult days; I'm sure God will bring about healing with all the prayer going up for you. It will be good to see some day in the future what great plans he has for this special little fellow.

Liz said...

Hi there. I can completely understand how you are feeling. My oldest child has eosinophils through his entire GI tract along with GI issues and has been fed via a GJ tube since 6 weeks of age. He is now seven. I am also a military wife and being that my husband has spent nearly 5 year overseas since our oldest was born I know the trials of separation your family is dealing with. I will be praying for your little boy. If I can offer any answers to questions or support I'd be happy to. God bless!

Ella said...

Was at the concert last night in Hastings NE. It was so great to finally hear you in person. We have been praying for your family. I know your heart has been torn may times whether to stay at home or go on the road. Wanted you to know you ministered to me last night and worshipping with you was a moment I will always remember. God bless you.

Valerie McGee said...

Our family entered into a medical journey with our son in 2002, it totally changed our lives. And as hard as it is ( because I still watch him struggle with pain daily) I have to say we are thankful for the journey. God uses the journey to glorify himself, you will sit in amazement at the things he will do, and through it all he is refining who you are and creating in you something even more beautiful. God will also use this to create in Nicky someone with incredible depth of knowledge, compassion and understanding. When a child goes through such a difficult journey it shapes their character into someone more pliable for God to use. I know this is the hardest thing you have ever had to experience but trust in the fact that God creates the most beautiful rainbows from the darkest of storms. On a sidenote: my son has had the surgery for both Reflux and Bile reflux and they are both fairly simple surgeries, nothing to be frightened about, he also lives with a J-tube (this is a feeding tube that goes directly into his jejunum). And yes, he can still eat certain foods but gets most of his nourishment from the feeding tube. He basically eats for pleasure. If you have any questions or just want someone to pray with please feel free to contact me. Romans 8:28

Melody Joy King said...

Happy Birthday Brother! I hope and pray that your 36th year of life is full of blessings. I am praying that you and yours will be constantly aware of God's presence with you always. My heart breaks for lil' Nicky and the physical suffering he's had to endure. I pray that God teaches ALL of you much about Himself through this. "God is always closer and kinder than we know." ~Beth Moore. I know that some of the most profound songs of joy come from deep valleys. Thank you for your great ministry of music and sharing. God has and is using you and your family mightily for His glory. Know that you all are loved and prayed for this day! With much love in Christ, Melody Joy :0)