Post Transplant Update Week 30

Today marks a big day in Ben’s transplant journey. 

Part of the transplant surgery included Ben getting a chimney ileostomy.

The main purpose of this is for access to his new small intestine.

I’ve mentioned that he has to have regular scopes to detect rejection of the small intestine.

In order to easily do those scopes they use the ostomy.

Most patients have them for 3-6 months and then they reverse them.

Today was the surgery to reverse Ben’s ostomy. 

It is the final step for him before we can return to Utah to live.

They give you this handy pager so you know exactly when the surgery begins.

The surgery took 1 hour and 45 minutes.

Everything went according to plan.

He will remain in the hospital for 2-3 days.

Ben is finally free of ALL devises.

No tubes nothing for the first time in 5 years.

He is excited.

Unfortunately they did have to give him a big dose of steroids prior to the surgery so he will have some additional puffiness for a few weeks.

He is feeling good and moving around already.

We have to stay in Ohio for 1 more month to make sure everything continues to do well.

Then it’s home to Utah!!

Post Transplant Update Week 27

 

Ben reached 6 months post transplant today!

He’s doing great. 

The picture above was taken 2 years ago just a few weeks before we left Utah for Ohio. 

The ones below were taken just a few days ago. 

You can really see the difference between the pictures. 

Ben continues with recovery and the tapering of his steroid dose.

We just completed his first visit home post transplant.

He still suffers from intermittent headaches and steroid swelling 

But he enjoys eating foods he’s gone without for years. 

Ben had an appointment with his GI in Utah to arrange for him to begin seeing Ben as his doctor when we get back to Utah.  He will treat Ben under the direction of the Transplant team in Ohio.  All lab results will continue to go to the Team and they will continue to decide Bens care and the Doctor in Utah will facilitate it.  Bens doctor in Utah is the one who referred us to the Cleveland Clinic to begin with. He has been following along with Bens treatment here in Ohio via a Doctor Share program.  He is aware of everything and looks forward to working with the team which will allow Ben to move home to Utah.

It has been decided that Ben will have surgery on August 26th to reverse or take down his ileostomy.  

This is the last step that needs to be taken before he can go home.

Provided all goes well, he heals well and there are no complications,

Ben and I can move home to Utah one month after the Surgery.

All Together in the Beehive State

 

Waking up to this beautiful sunrise over the Wasatch Mountains is a sight I have missed!  Ben and I enjoyed a wonderful visit home where our whole family spent time together!  Our visit started off with another short rode trip as a whole family to St. George in Southern Utah for a family wedding where Ben was the Best Man for his cousin Calin. 

Then it was day after day of family time.  Cousin Alex came up from Las Vegas and he and Ben got in a little hiking. I think Ben actually went for some type of little hike every day.  He has missed his mountains. 

Ben, Ollie and Pop pop had to give the four wheelers batteries a charge with a little ride around the block.  Oliver kept stopping and looking back to make sure Uncle Ben was keeping up.  And what’s a ride around the block without otterpops on the porch afterward. 

We had an evening of shooting paper rockets with the air compressor.  Ollie helped grandma set up her fairy garden.  We enjoyed time in the backyard with my babies. 

Two Birthday celebration dinners and parties, one for Kyle and then one for Brooklyn.  Somehow I didn’t get pictures of Kyle’s celebration. :-/  

Lincoln Ben and I made a visit to the Teepee ranch to see my parents. It was the first time Ben had been there in over 2 years.  

Brooklyn and Dad did a little construction project for Brooklyn, she needed a new TV stand for her college apartment. We discovered she’s quite handy with a circular saw. :)

It was so wonderful to just be together, laughing and enjoying each other’s company.  Family is what makes life so wonderful.  I love his family of mine!! 

Baby Feet!

Brooklyn 21 years old!

Ben and Alex somewhere on the Mirror Lake Highway

Brooklyn mastering the circular saw.

An afternoon in the back yard with my grand babies!

Ollie helping grandma with the fairy garden.

Hiking with Alex

Otter pops on the front porch!

4 wheeler ride around the block.

The wedding in St. George.

My Beautiful Girls!!

Ben looking good as the Best Man!

 

Me and my sweetheart!

My Parents and their home in the mountains. 

Ben and Ollie having quality conversation over cold cereal. ;)

I know it was a bit of picture overload, but we’ve got a lot of time apart to make up for.  This transplant adventure of ours has really taught us the value of time, love, faith and family!  It’s easy to take for granted some of these things in the day to day busy lives we lead.  But, I have really learned to appreciate all the small things. My faith in my Heavenly Father and his timing has increased, I’ve learned patience, I’ve learned that time stands still sometimes but yet passes in the blink of an eye at others.  My love and appreciation for family and friends has become immeasurable!  This adventure has stretched me to do things I did not know I could do and refined me in ways I didn’t know I needed. I wouldn’t trade my experiences or the blessings Ive gained.  But, I will say this, at the beginning of the adventure it all seemed so BIG and I didn’t know how I was going to do it.  Now looking back at where we were 2 years ago and where we are now I know the destination will be worth the journey.  We’re not finished yet, but I can see it! 

 

Road Trippin’

Ben and I have been planning a trip to Utah for a while now, he is going to be the Best Man at his cousins wedding. We will spend a little over two weeks there.  About a month ago we bought round trip airline tickets for the trip.  A few weeks before the trip I told my husband we should have driven Bens new car home and flew back to Ohio so that when we move in a few months we won’t have to each drive our own car.  But after some discussion we decided since the flights were already purchased we would just fly.

Well about 5 days before our flight I again had a thought that we should drive the car.  Again everyone talked me out of it.  But honestly this thought would not leave me head... Drive the car.  I had this debate with myself and Ben and Lincoln on a daily basis.  Then I called the airline to see if they would refund me the price of a round trip ticket and let me purchase just the one way.  They don’t do refunds but they would give me credit for the 1st flight that can be used anytime in the next year.  This news made me again think we should drive.  Finally Linc told me he didn’t care, but that I needed to make a decision.  Back and forth I went in my mind.  It really was the craziest thing, I’m usually very decisive.  Our flight was for Wednesday morning, but if we were to drive, we would need to leave Monday morning to get to Utah in time. So finally Sunday Ben and I decided we would just fly.  Easier and quicker.  I went to bed and felt good about that decision.  Monday morning Ben got up and went into the Clinic for his blood draw.  I got up, said my morning prayers.... and there it was again as plain as day, drive the car.  That was it, I started packing.  I called Linc in tears and told him I couldn’t explain it and I don’t know the reason but I felt strongly we should drive.  So when Ben got home from his blood draw at 11:00 am, I said pack up as fast as you can so we can get on the road, were driving. Here we were making the exact same drive we took 2 years ago today, only this time we we’re driving west instead of east.  Sometimes in the early days of our adventure here in Ohio, Ben and I would be driving on the I-90 into Cleveland and I would often say “If we just kept driving we could be home in two days.”  It felt good to finally be headed home, even if its just a visit. 

I’ll never know why I had such a strong feeling, but I do know I tried and tried to talk myself out of it, but all along I knew we should drive.  It was the worst week ever, me questioning myself. Once I made the decision I felt so good about it, I knew it was the right thing.  Maybe it was safer than flying on a full flight and the risk of Covid, we’ll never know.  But I do know that is the last time I question myself and what I feel like was a prompting. 

So Ben and I packed up his new car and left Cleveland at 2:00 pm in the afternoon headed for Omaha, Nebraska.  A 12 hour and 35 minute drive of 814 miles.  We needed to try and do it in one day that was the goal.  If we got too tired we’d stop sooner but that would make the drive take us 3 days instead of 2. 

We made it to Omaha no problem.  The next morning it was the long trek across Nebraska, Wyoming and into Utah, another 13 hours and 55 minute drive of 946 miles. It was a long drive, but man did we have a fun time. 

* Toll Roads

* Beautiful Blue Skies

* The Mighty Mississippi

* Worlds Largest Truck Stop

* Sunset over Iowa

* Rolling Cornfields of Nebraska

* A lot of good  music

* Snacks and good Conversation

Road trips aren’t for the faint of heart but man can they be a fun adventure!

 

Light up the Point

 

Ben and I went out to Cedar Point in Sandusky, Ohio to watch a firework spectacular tonight!!  Cedar Point is a huge amusement park.  It was fireworks done social distance style. Everyone was parked in the parking lot staggered.  You could watch from your car or sit on lawn chairs next to or in front of your car and know one was nearby.  They broadcast music to the fireworks over the radio.  We stopped on our way out and picked up some beverages and snacks.  It’s a pretty drive out because you can take the highway that follows the shoreline of Lake Erie and goes through a bunch of small towns.  It was a really fun night for the two of us!  I wish I could share a video of the firework display.  It was amazing! 

Happy 4th of July!!!

 

Post Transplant Update Week 21

Today Ben had his first CMP or (Comprehensive Metabolic Panel) come back all within normal ranges for the first time in over 5 years!!  We couldn’t believe it!  He continues to improve weekly.  He’s still on high steroids to prevent rejection, which causes body swelling.  They are slowly tapering him down, but as I’ve said before this takes months. He suffers from periodic headaches and hand tremors but otherwise is doing great!  

We finally purchased him a car in preparation for him being here in Ohio on his own for a while.  The bad news... they aren’t going to let him be in Ohio on his own.  We found out at our appointment on June 17th that I have to stay here until Benjamin gets to go home to Utah.   This was very very difficult for me.  We were always under the impression that I would be able to go home once he was stable enough to live alone. My heart is torn between Utah and my family who needs me there, and Benjamin who needs me here.  It was a rough time for me.  We are both going home for a visit in July.  It will be a trial run for Benjamin.  If all goes well when we get back to Ohio he’ll have a small surgery and if he continues to do well with no signs of rejection or complications from the surgery, we will both get to go home to Utah to live in late September.

All of Bens appointments with the Team have been virtual.  It’s crazy how Covid has effected everything so much.  It’s also amazing the things we can accomplish thanks to technology. 

I sometimes have to remind myself that I am not in charge.  I’ve said it before but its worth repeating Heavenly Father is in charge.  In just a few weeks we will hit the two year mark of our time here in Ohio.  We have seen miracles and blessings in abundance and we couldn’t be more grateful. 

 

A Walk to Remember

Gully Brook Metro Park:

Ben and I spent June walking!

We both took up walking to find release from the quarantine.  I found myself walking every evening while Ben went for his walks in the morning.  Sometimes we walk together but usually on our own.  I discovered that walking is good for my soul.  It helped relieve my stress and worries..  We both enjoy the solitude of walking.  Put on your headphones, play your favorite music and lose yourself in your thoughts. Or leave the headphones home and enjoy the sound of the woods.   Walking has also become a big part of Bens recovery, helping him gain stamina and energy.

This part of Ohio we live in is full of metro parks.  They are little gems hidden among the city.  Between us we’ve discovered quite a few of them.  He has his favorite and I have mine.   One thing I know for sure,     I will miss these walks in the woods.