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!