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Thank-you again for all the love, support and prayers!

We are SO happy to be home, albeit temporarily for Steve. He returns to Mayo on Tuesday for a follow-up on his Bravo 48hr Test, actually follow-up on all GI tests and also for follow-up with the Neurologist, plus to get a nerve-root block on his T6-T8 discs.

Although we still don’t have the exact diagnosis, we have found several issues along the way that could be causing the pain, and have also ruled out some causes.  It has been by far the most expedited, medical experience!

So far Steve has been diagnosed with the following:

-         Hiatal Hernia (stomach bulges into the chest)

-         Herniated Thoracic Disc – T6, T7 & T8

-         Myocardial Bridging (about 30%)

All of these could be causing the pain, although they usually don’t cause the amount of pain Steve is feeling.  But, the great thing with the Mayo is they don’t rule anything out just because statistics are against you, or because ‘you’re too young’! If you were to ask me (Sharon) what my best advice/pearls of wisdom was following this experience, I would say to go with your gut AND get a second opinion.

Even with the wonderful, highly recommended cardiologist at home, what he wrote off so easily as an artifact, was in fact something (myocardial bridging), that although at 30% isn’t serious, it’s something to watch down the road. Good to know!

We also had the privilege of meeting several patients during our stay, and they would echo what I just said.  The one lady had been misdiagnosed a few times because she was told she was too young to be having what she described.  She’s having radiation for cancer now, which is spread all over her body and has been there 3 weeks already.  The special friend I made, Jenny-from-Idaho, started chemo on Thursday for breast cancer.  She was initially told by her Doctor’s office her results were negative and she was fine, only be called back the next week to be told actually she did have breast cancer.  Her husband’s grandmother thought of the Mayo Brothers as up there with the apostles’, and no matter what ailment, she’d pack the family in the car and drive to Rochester. I can completely understand that – (I also understand that they can’t save everyone) but, I don’t think anyone leaves Mayo without feeling like they were treated like a person, not a number, and were also taken seriously. Even the administrative staff are rooting for you! Steve and I felt so loved by them, and were just so impressed by the caliber of the employees and volunteer’s, and the compassion they showed.

I’m sure Steve will have an update too, but he’s still sleeping, as this has been a rigorous few weeks (months if counting the onset of the chest pain).  He has done such an amazing job, and doesn’t complain with the tests/pain/discomfort – he’s my hero! If I have a headache the world knows! Lol!

We did have a long drive home though as the chip in his esophagus ‘pulls’ each time he swallows, and I could tell he was in pain – I was driving, and night-time is NOT my favorite, let alone out in the middle of no-where.  But PRAISE THE LORD we got home safe and sound!  It was wonderful to see our precious Graden again! We also enjoyed celebrating his 3rd birthday yesterday!

Thank you again, and we’ll keep you posted as we hear more results/updates!

Love Steve, Shaz & Graden

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Day 7 – October 8th 2013

Thank you for your continued thoughts and prayers.  Although this has only been our 4th business day at the Mayo with appointments and procedures, it’s been a week since we left, and we’re pretty exhausted and REALLY missing our baby boy!! We know he couldn’t be in better hands, and he’s loving every minute! The few times we’ve talked to him, he’s said good-bye to us and immediately resumed his playing, while us, on the other end, grab the tissues! Lol!

Anyway, with that said, we know that in the big picture, our job here is important, and to keep at it for this short season, and that our time away from precious Graden is very temporary in the long run! The progress we have made in such a relatively short time just amazes us.  In 4 days, Steve has had more procedures and results than in at least 6 months.

Yesterday we tied up the Cardiology, and apart from the Myocardial Bridging, have ruled out the heart as the single cause of pain.  Steve also had a Neurology Consultation.  Dr. Porter ordered another EMG (Poor Steve – he thought he was getting away with just the one!).  She ordered it because when he had the EMG at home, they only tested his arms and legs, not the area of pain – the chest.  (We understand why the Mayo is world renowned, they truly treat the whole body).  After the EMG early this morning, we hurried to the next floor as we had a Gastroenterology Consultation with Dr. Burdick. He explained that although rare, one can have an Esophageal Spasm, and when it’s pretty bad, it can mimic a heart attack, and they call that level a Nutcracker Spasm. Based on other symptoms Steve has, he is pretty confident that this could be part of the cause too.  He has ordered Steve to have a 48hr Bravo test, where they insert a capsule that has a radio transmitter in it, and he can ‘record’ the episodes on a portable recorder.  Dr. Burdick has also ordered a Rad Esophagus X-Ray, which is VERY uncomfortable…they go through the nose into the stomach. That is scheduled at 7:45am tomorrow! Yikes!

 

At noon today at the Phoenix location, Steve had the Thoracic MRI (as he’d only had the neck MRI back home).  He was a real trooper, as MRI ‘s have quickly become his least favorite thing to do!:)  After he was done, we went back to scheduling, and headed to the shuttle, when he got a call from Dr. Porter (Neuro) and she already had his MRI results! Talk about speedy!! She told him the found his T6 disc is bad and it is the exact location that causes heart pain (hopefully this is whats causing the pain!).  He has a consult with a nuero surgeon tomorrow afternoon affter all the morning tests to go over the results and options.

On Thursday, he has another GI Procedure (Esoph Manometry).

Steve is napping right now, as it’s not only been physically exhausting for him but also mentally.  For both of us actually, but if I nap now I won’t fall asleep tonight! Lol!

We didn’t expect this journey to be easy by any means, and also didn’t think that it would necessarily end with one cause, but we constantly tell each-other that this is truly a great example of our vows “in sickness and in health”, and that if we can get through this we can get through anything!

We are so grateful though for all your love and support, as the praying community is a powerful one! THANK YOU!

We miss you guys, and can’t wait to be home, but know that we’re in the right place to get my amazing, wonderful husband back to full health.

Steve & Shaz

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Day 6 – October 7th 2013

So tired after today’s testing.  First set of test starts at 7am with another EMG..(I very much dislike EMG tests)  Then after the emg i will be meeting with the GI Doc.  Then after that we head to Phoenix for a thoracic spine MRI.  All those test before 12 noon!   Off to bed.  Will update this post tomorrow afternoon.  New post on Day 7 covers some of today.

 

THANKS

 

STEVE

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Day 4&5 – The Weeked

The weekend was hard. All the tests it really took a toll on me and i was super wiped out.  With the Mayo clinic closed we decided to try and see a few sights nearby. Feeling well and only slightly dizzy we hoped in the car and headed out toward Sedona.  About 20 min into our trip i was feeling so tired and super dizzy we had to turn around.  I ended up sleeping for most of the day.. :)   Sunday was full of more of the same.  Super dizzy and sore arm from the Angiogram.  We did manage to drive about ten min to Fountain Hills home to the tallest fountain i the world.

STEVE

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Day 3 – October 4th 2013

This morning we awoke at 6am and headed to the main Mayo hospital in Phoenix. Mayo has a nice shuttle that runs between the different campuses every 30min. After checking in I was notified of some blood work needed to be done before we could start the angiogram procedure. They were testing for coagulation rates mostly amongst other things. After the blood work was done we checked into the cardiac pre-operation department and immediately they went to work prepping all possible areas to insert the angiogram catheter and an IV. I was told that they were going to try and slide it up the main artery in my arm and if that didn’t work it was onto my groin (oh joy). They also marked my legs and feet with a sharpie (I look like a map to buried treasure) where good veins were just in case they needed them in a rush. The total prep took about an hour and once done I was wheeled of the one of the super techy cardiac op rooms.

The op room was filled with tons of amazing gear and giant 70+ inch screens all hanging from the ceiling. With a staff of about 8 people they went to work fast. I was under the impression I would be knocked out for the whole thing when in fact I was totally awake. The arm cath worked well and I was able to watch the whole process on one of the giant screens above me. It’s a strange feeling watching a tube being threaded into your heart. Once they reach the testing point they release Iodine that is picked up on the live X-ray in bright colors. The image was reminiscent of the Pepto-Bismol commercials watching the pink goo coat the walls of the stomach. The test results confirmed what the cardiologist thought was going on with the myocardial bridging. In my case they feel the bridging is not the root cause of the extreme pain that I am dealing with as I have less than 50% blockage. Most people feel pain around 70% blockage and have to have stints put in. What is amazing to me is that the previous doctors didn’t see this and just waived it off as an artifact on the imaging tests. The weirdest part was feeling the tube being pulled out! I felt it all the way down the inside of my arm. After closing the incision they put this neat clear inflatable bracelet on to keep constant pressure on your artery so you don’t spring a leak.

During the recovery my phone rang at it was my insurance confirming they would cover a head/brain CT scan scheduled for Monday morning. This scan is another avenue of testing my Doctors are looking at (more info about this soon). The rest of today was spent recovering and scheduling meetings with a Mayo neurologist and a GI specialist to see if they are able to help in diagnosing me.
The Mayo Clinic is an amazing place and it is neat to see people working together to diagnose out of the box people and their problems. I have started calling Mayo “Disneyland for sick people”.
So far they get an 11 on a scale to 10.

Again THANK YOU for your continued prayer and support during this tough time. We are so grateful for all our amazing friends and family.

Steve &  Shaz

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Main Mayo Clinic

Day 2 – October 3rd 2013

Thank you SO much for your continued prayers and support! We are so grateful!

We started the day with Steve having a Cardiology Evaluation. The Cardiologist was VERY thorough, and had studied all of Steve’s previous test results prior to our appointment. Right off the bat she told us she had compared the CT Chest Scan and the Nuclear Heart Scan, and found the same abnormality on both – possibly something called a Myocardial Bridge. Which is amazing, as no-one else had thought to compare the tests, and in fact, Steve was told by his local Cardiologist that it was probably just an artifact on the scan. With that said, she has ordered a Cardiology Catheterization (Angiogram) that is scheduled for 9am tmrw! Which means arriving at the Phoenix Mayo Hospital at 7am! Which means waking up VERY early!:) Please keep Steve in your prayers as he will be semi-out when they do this test, it is invasive, but will prayfully give us a really clear idea of what’s going on, and what direction to take. They will keep him up to 6hrs after the procedure unless there’s a blockage in which case they’ll keep him over night.

After the cardiology appt he had some blood work done, and then he had a Cardiology Echocardiogram. Steve said it was the most thorough Echo he’s ever had! Who know he’d be such a pro! :)

Depending on how tmrw goes, he’s scheduled to see the Neurologist on Monday, and to have a Radiology CT (Head and Face) on Wednesday. The times and appt’s keep changing, as we try to make them sooner when possible or different tests are added. We are getting to know the layout VERY well, and I think some of the staff are getting to know these crazy-causal-Californians! :)

So far, we have been BLOWN away with the staff, and the efficiency! We feel like they really care, and really want to help us – we have been completely overwhelmed by their kindness and friendly, helpful attitudes! Even the sweet clerk at the front desk of the hotel said she’d bring us some of her personal board games for us to play! :)

Well, it is 8:45pm, and we are ready for bed! Lol! It has certainly been a long day, but has far exceeded our expectations for the first day here! We both said we feel like we accomplished more in 5 hours here at Mayo, than we have in 5 months back home. Not that we have a diagnosis yet, but that the number of tests and appointments we’ve had in one day spanned over months back home.

We are so thankful to the Lord for carrying us through thus far, and we are thankful to you for surrounding us in prayer!

Love you guys!

Steve & Shaz

 

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Day 1 – October 2nd 2013

Day One:  We ended up leaving a bit later than expected due to last minute things needing to be picked up or sent ahead.  By around 1pm we were smooth sailing through riverside.  At about this time we started pondering names for different parts of Gradens train layout that i am still building in the garage (more slowly these past few months).  We came up with some really good stuff just not an actual name for the railway.  We stopped for gas in Yucaipa and continued East on the 10 forever!  At a half  tank of gas we had already done 250 miles.  If i could only get that kind of mileage in the audi!  With no stops after getting gas in yucaipa, we made it to Scottsdale pretty quick.  Had a few problems checking in but all worked out in the end.  I am all ready for the first appointment tomorrow and hope it will go well.   So please be thinking of some great names for Graden’s (DADS) model railway line.  eventually all the engines will be painted with the name.   Thank you for all your prayers.  I will update again tomorrow.

Steve & Sharon

 

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