Post Transplant Day 5 and Happy 26th Birthday!

Happy 26th Birthday Benjamin!!

Today was another day of ups and downs.  We had bleeding in the stomach again.  One of his abdomen drains (JP drain) needed an extra stitch or two because it was leaking. This caused an increase of pain.   It was a very hard day of trying to manage pain.  Even through all the pain he still got up to walk twice today. He is so tough!

We brought him in a birthday balloon and then some friends from the singles ward brought him a bucket of fun things to do to help pass the time and some more balloons.  They couldn’t visit him, but it was fun for him to get a few big cards with a lot of birthday wishes for him to read.  One card from the Cleveland YSA and one from the Kirtland Ward. They also gave him a big fuzzy blue blanket which he loves!

The nutrition team sent up his bag of TPN with an Orange Fanta picture taped to it.  They had heard he was craving Orange soda so this was a fun surprise. Not quite the real thing but funny nonetheless!  He also had to have a unit of blood today because of the bleeding from his stomach and a when the unit came up from the blood bank they had attached a birthday card as well. 

The cold wet washcloth on his head has been helpful and soothing when he is suffering with a lot of pain.

For mommy today took a toll.  While driving home I found myself in tears.. its hard to watch one of your kids suffer with pain that you cannot take away.  It’s times like these I’m grateful for my Heavenly Father and my Savior.  I am not alone... they are with me and all will be well.
Ben’s quote of the day: “Can I have a swabee”  He’s referring to the green mouth swabs you wet his lips with.  He loves these, especially since he isn’t allowed an anything by mouth at this time. He asks for them frequently.

Post Transplant Day 4

Today Ben got up and walked about 15 feet and then sat in a chair for 30 minutes.  Not only is this a great milestone, but he did it twice.  We’re still on a constant adjustment to try and manage pain, but it’s improving.  The transition of getting out of bed causes quite a bit of pain. Tomorrow we’re hoping he can a walk a little farther.  He needs to get to where he is getting up and walking 4 times a day.  That is the current goal for now.

Our next major milestone will be the biopsy of his small intestine to check for signs of rejection.  This is scheduled for 1 week post-transplant on Tuesday.  Also... NO MORE catheter.  This made him very happy. 

Ben taking his first walk. 

He went out his room and to the hall, his door is inset a few feet from the hall.

Ben and one of the Doctors from the transplant team Dr. Fujiki on the right.

On the left the Fellow that works with he transplant team, I cant remember his full name its long and Slavic, but his first name Stepan. 

Benjamin continues to be positive.  We’re so very grateful for all the nurses and techs who really try to make him comfortable! 

Quote of the Day: “Like my walker?”

Post Transplant Day 3

Ben was up in the chair again today.  He had an ultrasound and X-rays to check for fluid in the lungs, swelling of the liver and to see the vasculature or blood flow in and between the new organs. 

All the tests were good. It was cool to see and hear the blood pumping to his new organs.  

His pain is strong but manageable.

Quote of the Day: “I’d love an icy Orange Crush!”

Time moves very slowly here in the hospital. 

You will notice “Welcome Back” written on the board.  This is because our nurse today is the nurse that did Ben’s pre-op for Transplant here on the floor a few days ago. 

The view out Benjamins window.  If you look closely you can see some of downtown Clevelands skyline.

They have these great cubbies everywhere, they are places for family to meet and rest outside the room.  From this particular cubby I can look out the window and see into Bens room across the way.  I come here to talk on the phone so I don’t disturb Ben but I can still see if anyone comes into his room. I also eat my meals in this little cubby. 

This is what house keeping leaves you here in the transplant unit.  Isn’t it fun?  I told Ben its like a mini cruise animal. Our house keepers are very creative. :). This is made with washcloths. 

Post Transplant Day 2

We have never been under the misconception that this process would be perfectly smooth.  We expect bumps in the road or ups and downs. The last half of yesterday and through the night were definitely one of those down moments.  It was discovered that Benjamin was bleeding from his stomach.  He also had an adverse reaction to his pain narcotics, this caused him to not feel like himself mentally.  He was combative and angry with everyone.  He was very agitated. If you know Ben at all you know this is completely uncharacteristic of him. My husband was with him at the time and he even said it was scary, Benjamin was not like himself at all and they had a very long night!  Luckily after letting the medicine wear off they were able to counteract the effects and he was finally able to rest.  

Things turned around and they were able to get the stomach bleeding under control, change his pain medication and he’s back to feeling like himself again.

The other good news of the day, is that Benjamin was released from the ICU and is now on the transplant floor.  We see baby steps forward and we are grateful for each step.  We feel strength from the prayers and support being offered to us from so many people.

Ben’s quote of the day: “I hurt”

Bens IV Tower

  

Ben finally resting in his private room on the transplant floor.

Video of the transfer from ICU bed to room.  It was a process. :) 

Post Transplant Day 1

Before transplant Ben and I talked about what he wanted shared and how he wanted to document his transplant.  We decided we would give  daily updates via posts and pictures to our social media to keep friends and family updated. We know people care and are following Bens transplant journey.  We also know by sharing Ben’s experience it will help increase awareness about transplants and the blessings of organ donation. 

For those that have found our blog by searching transplants etc. We hope our sharing Bens experiences will be of help to you.  We know we are grateful to the information we have found via the internet of others experiences and the insight it has given us. 

We are also going to share something Ben says each day... as a little Quote of the day. 

Yesterday afternoon Bens breathing was so good they removed the ventilator and he was awake and talking.  This was a huge milestone for him to have the ventilator removed the same day his transplant was finished. He is in a LOT of pain. He is still in the ICU.  Lincoln and I are taking turns sitting with him 24/7.  The ICU has a rule that when they have shift change all visitors must leave.  This is because they discuss patients with the incoming nurse and you can hear a lot of conversation from different beds in the ICU because of close quarters.  This rule helps to protect the privacy of each patient.  Shift change is from 7:00-8:00 am and 7:00-8:00 pm. Lincoln and I are doing shifts.  He covers the night and I cover the day.  So I typically come in around 9:00 a.m. and Lincoln goes home to sleep.  He returns around 9:00 p.m and I go home and sleep.  We feel having someone with him is important because you are the best advocate for your family member. We have always made sure we were aware of any treatment he is receiving and the reason why, especially when Ben himself is not at his fullest mental capacity. 

Today they got him up for the first time and he sat in a chair for over an hour.  It was quite a feat for him to get up.  It involved a lot of helpers and a lot of pain for Ben. 

Quote of the day from Ben...

“I am very very beyond blessed.”

Transplant Day Part 2: Life from Death, Sorrow to Hope

   “Without the organ donor, there is no story, no hope, no transplant.  But when there is an organ donor, life springs from death, sorrow turns to hope and a terrible loss becomes a gift.”

We will always be forever grateful to the family of Benjamins organ donation for their selfless act. Our prayers are with them in their loss and grief.  

Ben’s transplant surgery took about 14 hours. 

What began on February 3rd finished early afternoon February 4th.

After they took Ben into surgery I was shown into a waiting area. I tried to busy myself visiting with Ben’s young friends and girlfriend. We watched part of an episode of the bachelor, funny I know but it was something mindless to distract me.  Around 2:00 a.m. I convinced my young support team to head home for a few hours of sleep, Assuring them I would reach out if I needed them.  Then I went in search of somewhere to try and get some rest. 

A nurse from the OR made arrangements to call me and update me on progress of the surgery every few hours.  During one of these calls she asked me if I needed anything.  I asked her if she knew where I could possible get a pillow and blanket.  She so sweetly offered to bring me one.  

The Cleveland Clinic surgical center has a really nice huge waiting room with couches a small eatery and tons of space. It is a very busy place during business hours but is closed at night, meaning there isn’t anyone at the check in desk, the eatery is closed and it isn’t manned by employees.  I decided to walk over there and see if it was a place I could wait and rest.  It was perfect.  I was the only one there and was able to get some sleep in small increments. As much sleep as a person can during a time like this.  Around 5:00 a.m. the place started to come alive as employees and people started arriving for out patient surgeries. 

A funny little moment.... At one point during surgery the nurse called me from the OR and said Dr. Kareem had a question for me.  He’s a funny guy with a dry sense of humor.  He says to me “Have you been feeding this boy lentils?  I replied no. Dr. Kareem said, his stomach is lined with what looks like lentils.  We determined it was seeds, from all the green salsa Ben would put on everything. :) 

My sleep area/waiting room.  

At around 8 or 9 a.m. Ben’s young friends Brandt and Michael rejoined me in the waiting room. Around 12:00 noon I got word that the transplant was finished and everything went well. They were just closing him up.  I was called into a consultation room to meet with Dr. Kareem.  As I was waiting in the consultation room, in walks our transplant coordinator Anita.  I was so grateful to see her there.  She has been with us from the very first appointment and we have built a very real level of trust and because we have worked with her so frequently we have a very good communication system.  She has come to know us personally, so it was nice to have her there to ask questions after I finished talking with the Doctor.    We love and respect our transplant team, Dr. Kareem, Dr. Osman, Dr. Fujiki, our coordinator Anita and our PA Marissa. 

Doctor Kareem said surgery went well and the donated organs were very healthy.  I was so relieved. They told me Ben would be moved into the ICU and we would be called when we could go up there to see him.  They did remind me he would be on a ventilator and heavily sedated. As I left to rejoin my young support team Anita walked with me to meet these fine young men who had looked after me and were such good friends of Bens.  

I believe it’s a little unusual for them to have patients develop a local support group so quickly and easily.  We truly have been blessed as our church community rallied around and supported us so quickly after our relocation.  Especially for Ben make friends and integrate in the area so easily.  I don’t think they see this in their other transplant patients too often. 

Ben’s friend Scott and Lincoln arrived from the airport just after 1:00 p.m. and within 30 minutes we were called to the ICU to see Ben.

This was our first look at him. He is on a ventilator. 

He has IV access through his Hickman, he had a regular IV in his left arm

And an IJ in the Right side of his neck. 

 They kept him restrained so that he would not pull his ventilator out.  

We were told this is common practice. 

This web of tubes on his right arm is connected to the IJ.

Posted to Facebook February 4th:

Update on Benjamin. 

Transplant Surgery, check!

He did great and is in the ICU!

There is real power in prayer! 

We are forever grateful for all the prayers, good thoughts, love and support you’ve all given.

Keep them coming that he will not develop infection or reject these new organs.

TRANSPLANT TIME

Today started as any other day for Ben and I here in Ohio.

It was actually a nice spring like sunny day for early February.

I was on a walk with a friend when Ben called me.  He asked me “Where are you?” 

I told him I was in the neighborhood behind Heinens, a local grocery store near where we live.

He said, “You might want to head back, I just got a Transplant call and we need to head to the Cleveland Clinic within the next hour.

You can imagine my response.  With heart racing I ask, “Are you serious?”  

My friend and I immediately headed for home at the fastest pace we could walk without running. 

I think she was as excited as I was.  Oddly enough I didn’t feel nervous or anxious. 

I just felt peace. It actually felt really right. 

Ben and I have a process we’ve developed when these calls come.

First call Dad.

Second, we get our to go bags ready.  These have everything we’ll need to get by for the next 48 hours. The first time we did this it was a bit of a scramble but we learned from the first “dry run” what things we would want in our bags..  So it was easy this time. 

This was technically our 3rd transplant call, but our 4th organ offer. 

Third, the other important calls happen, Ben calls and talks with each of his sisters, his cousin Alex, the grandparents and his girlfriend. This is a very tender time, because we know that Transplant surgery is very delicate and risky, so he knows there is a small chance this could be the last time he talks with the people he loves. It is an emotional time as I listen to these conversations and often tears run down my face. 

Fourth, arrange for Ben to receive a priesthood blessing. Luckily Ben has some great friends that met us at the hospital to administer to him. Scott Weber and Michael Mann.  Throughout the next 48 hours Scott, Michael, Irelan Ming Ben’s girlfriend, and Brandt Hansen would make sure I was not alone, had Coke Zero, snacks and company.  These wonderful young people he has met through the young single adult ward made sure I was taken care of until Lincoln could arrive. The only time they left me alone was for a few hours from about 3:00 am to 7:00 am while I tried to catch a few hours of sleep on a couch. And it took some serious convincing for them to leave me alone for that long.  Scott even picked Lincoln up from the airport.  These young men are all Medical/Dental Students, so they are busy boys. Taking time to minister to me was a sacrifice of their time. They truly were angels to me and I am forever grateful for them! 

After our last dry run, we had decided that Dad wouldn’t catch a flight until Ben was actually in the OR and surgery had begun.  This way he wont take time off and travel here and the transplant not actually happen.  

We arrived at the hospital around 4:00 p.m., we were checked into a room where they would begin the gambit of pre transplant preparations.   These include, blood draws, chest X-rays, urine samples etc. and meeting with members of the transplant team to sign consent forms. 

Then we wait.  Wait for the organs to be procured from the donor and to make sure they are going to be the right organs for Benjamin. The donor was in nearby local hospital so there wouldn’t be much time between procurement and surgery starting for Ben. 

I posted this to my social media account:  It’s TRANSPLANT TIME!! At 11:30 p.m. Ohio time they officially started the transplant.  Prayers on Ben’s behalf would be appreciated!  We love you all and are grateful for your love and support! 

We believe in God’s timing!  We have waited with faith in Heavenly Fathers plan for Ben and our family. We know this transplant is happening at the right time with the right organs for Benjamin.  We know whatever the outcome Heavenly Father is in charge.  

Ben and I in the waiting room before being admitted to a room.

Ben’s stomach pre transplant. Having pre-op tests done. 

Trying to relax, talking with his guys.  

Ben and I waiting in the hallway outside the OR just before they took him in to start surgery.