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 ;)

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.

Monday, September 13, 2010

Formula 1...through 8

Today was the day the Doctor's tested for allergies with a blood sample to determine what Nicky is allergic too. Results haven't come in yet. They also tested 8 different formulas for Nicky to attempt to ingest orally. We only needed one to work, but none of them did. The second formula he kept down 2 ounces then minutes later 2 more ounces. Then he lost it. Three through seven also rejected (this is taking place over a period of hours, to pace the poor kid, who wants to vomit that much in a short period of time, you need a break) Number 8 he kept for 15 minutes then lost it. The doctors were hopeful that he may have kept it down and wanted to try again. Mommy stepped in and said, "Enough for the day." I'm so proud of her. He was very tired and needed sleep. Tomorrow we try again. Still an empty belly. Sarah is being visited and has been brought food. Daniel is having a blast with friends. Our family is not alone. We are so thankful to our friends and family for their love and support. And thankful to you for your prayers.

Michigan's Mixed Emotions (Nicky)

As I sat down in the back lounge of the bus yesterday in Berrien Springs, Michigan with my Troy Polamalu Jersey on, ready for the first NFL game of the regular season to start, the phone rang as soon as the big NFL song started. It was my wife, Sarah, calling to inform me that she was taking my youngest, Nicky, back to the hospital. He was diagnosed with EE (Eoniophilic Esophogitis) last month after being unable to keep most foods down for the month prior. He has been on a steady diet of yogurt, goldfish and dry cereal. Until a couple days ago...he can't keep anything down, not even water. Sarah said she was crying out to God during church, "I have food and can't feed my child!" Daniel went home with friends and Sarah took Nicky downtown Pittsburgh and after finally reaching Nicky's specialist at home, he was admitted.

They are doing blood tests to discover what allergens are in his esophagus, hopefully we find one, then we can address the issue. They were going to do a feeding tube last night, but he needed to be hydrated first. So fluids all night long, then they are going to attempt to feed him a special allergen-free formula orally, if he does not keep it down, they will insert the feeding tube nasally. But as of now, nothing has been in his little belly for a couple days. And my son is hungry. Sarah said she'd never been so excited about a feeding tube, "He'll have food in his belly!"

He is being well taken care of. His mother loves him dearly. His doctors are the best and he's on the top of the list. His God has always had Nicky firmly in His hand and loves him more than anyone could. The community of friends that we love so dearly are taking care of Daniel, cutting our grass, etc.

If you've come to my concerts you hear me talk about Trust vs Clarity. I'm trusting. When the time comes for me to fly home I will in a heart beat. But I ask for your prayers for us as Sarah and I have decided that I remain on the road for the time being, sharing the love of God through Jesus with you.

The Steelers won yesterday. My boy is in a hospital bed. As Mac Powell said, "Some things are more important than football." I'll keep you posted.

Much love.

Sunday, September 12, 2010

MARION ILLINOIS

We have been playing the most ugly venues, just hideous, like this one. The Marion Cultural and Civic Center. See what I did there: sarcasm. This is my second time playing in Marion, Illinois; the first being last year with Glory Revealed. The show was fantastic, the place was packed and the people sang with gusto. Beautiful.

The day was kinda funky though, an example of when you don't have an actual plan for the day, it can just drag on until the show. None of us guys did any exercise since it was kinda gloomy: I blame it on the barometric pressure as opposed to laziness. I was gonna get picked up at the hotel to go back to the venue, so I was sitting by the pool under heavy cloud reading a Clive Cussler novel when the sun came out and everything changed. I called B (Tour Manager and fellow Pittsburgher) and cancelled the runner picking me up, bought a Snickers, read another chapter and stared to doze, then I did. I conked out for 45 minutes, I'm sure my mouth was hanging wide open, the skin on my face tight when I woke up from the sun, but I felt rested and glad to catch up on the lack of sleep that you invariably get when trying to sleep on a moving bus.

After the show, we mingled with the people of Marion, wished Christian and Ashton Happy Birthdays and were privileged to have our friend Isaac pray for us again. Joe Shirk's (BDW Keyboardist/Bus Driver) parents visited and his mom brought two breakfast casseroles. Nothing like b'fast at 11pm. Incredible. Then the Shust boys had movie night in the back lounge until 3:00am. Some movie about New York in the 1940's and Cannolis. We watch it every fall.

Saturday, September 11, 2010

CHICAGOLAND

Big day yesterday in Suburban Chicago. I jumped of the bus first thing and without even checking out the venue I hopped in a car and went to the hotel. My daily plan is to exercise in the morning and either catch up on sleep in the afternoon or write. Yesterday was a writing day. I got a beautiful 45 minute run and then did 4 phone interviews ('phoners' we like to call them) while I walked through Goose Lake Park in Medinah. Then I ran back, ordered an Italian Beef sandwich and a cannoli, thus nullifying my run, showered and began my first online writing session with Carl Cartee. We wrote a killer song based off of verse from Psalm 46 and 47, Nehemiah 1:10 and John 1:5. "Clap Your Hands" I think we're gonna call it. Skipped dinner because my friends the Freemire's were bringing us 2 deep dish pizza's from Lou Malnati's after the show, which is turning into one of my favorite traditions. Obviously. ...and that of my bus-mates.


The show went incredibly well, people were engaged and worshipped, I love it when people get lost in the worship of their Savior and unabashedly demonstrate their love for Him in song. It's beautiful. The biggest news: 28 people partnered with oneVerse.org last night!!! The 96,000 people in East Africa who speak Ndamba are coming closer and closer to hearing the Word of God for the first time ever! Thank you, Chicago!

Friday, September 10, 2010

"Face North and real subtle like, turn left"

Nathaniel's answer to the question "How is it that you are going to Kentucky when there's a War going on?" Last of the Mohicans. Great movie.

We played our 4th show of the Hope Restored Tour last night in Somerset, Kan-tuck-KEY outdoors on a beautiful overcast evening at the end of a beautiful sunny day. The threat of a tropical storm putting a damper on the evening was never realized and the parking lot was full of close to a thousand Kentuckians. Wow. Spellcheck actually recognized the word Kentuckians. The stage was small but the crowd was full of energy and thankfully I love the guys in my band, so I don't mind close quarters.

My manager, Moose, drove up and wore purple in support of his beloved Minnesota Vikings and watched them lose on the bus. I ran in at one point near the end of Big Daddy Weave's set to check the score and was ready to go back on stage and sing the final worship songs with them, and right before I knew Mike was gonna call me back up, I started to leave the bus, but in the darkness of the mood lighting for the big game, I couldn't find the handle to open the door. I heard him call me and lo, I was still on said bus. I made a fashionably late entrance to the stage, while Jeremy continued to vamp on the opening riff of...well, I won't tell you what the song is, you'll have to come to a show.