Post Transplant Day 21

Check out the battle wound!

This is a happy face!!  All dressed with somewhere to go!

After 22 days in the hospital Benjamin gets to go home today!!! Home to our temporary home here in Ohio.

He gets to leave behind room 20 with it’s view, it’s  been a good place, but he’s ready to flee this joint. ;-)

He was thrilled to be leaving, he felt like he could walk to the car.  It is actually quite a distance.  The Cleveland Clinic his huge!!  So he got to ride in style.

Now we begin the next part of this Transplant Adventure with continued recovery at home.

He will have to go in to clinic every Monday and Thursday for labs and biopsies.  He will be taking approximately 30 pills every day as well as monitoring blood pressure and weight.   He has to track everything he eats and drinks.  He will be on one bag of vitamin IV a day for a few days until they see how his vitamin level absorption does at home.  This in itself is a huge win for Ben, a lot of patients are still on TPN at this point.  The first 3 months are the trickiest.  So he will be monitored very closely.  

We are forever grateful for the Cleveland Clinic, our doctors, nurses, techs and all other staff who helped with his care!  We are also forever grateful for all the prayers, support and love given to us by friends, family and even strangers!  We are grateful for the selfless gift a family made to donate their loved ones organs, they will be remembered and thought of by us forever. We are extremely grateful for modern medicine and the transplant and donor program. We know without a doubt Heavenly Father brought us to Ohio and guided us to these doctors so that Ben could have a chance at a full and productive life.  We know the adventure is not over, it’s just a new phase that will have ups and downs.  We also know Heavenly Father will be with us 100% of the way.

Now that Ben is home I will not be doing updates every day but I will do updates once a week or so.  There are still many hills to climb for Ben in this transplant journey and we have faith that he will push hard until he reaches his loftiest goal. 

Ben’s quote of the day: “I’m ready to sleep in my own bed.”

Post Transplant Day 20

This is the only picture I took today!  I spent the day playing solitaire while Ben spent the day anywhere but his bed.  He’s ready for a change of scenery.  This particular picture was taken while he was down for his bi-weekly scope/biopsy to check for rejection.  We’ll get the results from it tomorrow.  

Lincoln left early this morning for home and we miss him already!!  We had really high hopes that Benjamin would get to come home from the hospital today, but they want to make sure his inputs and outputs are in the right place so he wont come home and get dehydrated.  The plan is to monitor them for one more day and maybe let him go home tomorrow afternoon!  

Ben’s quote of the day: “I’ll be back, I’m going to do a few laps.”

Post Transplant Day 19

Happy Sunday!

Today was a good day.  Ben felt like he was having a hard time regulating his body temperature.  He would be freezing cold one minute and then a while later overly warm.  They checked to make sure he wan’t running a fever, he wasn’t.  There was a little fluctuation in his temp so they will keep a close watch on that.  Otherwise we enjoyed the day together.  Dad returns to Utah in the morning, Ben and I are going to miss him extremely!!!  I couldn’t have done this period of time without him here.  Ben needed him as well!!  The good news is he’ll be back in 15 days. 

The picture above was taken in one of the moments when he was freezing!

Ben loves his popcycles

Ben, Linc and I enjoying our last evening together for a few weeks.                                                                     

Ben and Irelan

 

Post Transplant Day 18

The good days are adding up!  

We recieved the results of Benjamin’s CT scan from yesterday, one of the clots that was in one of the donor veins is completely gone and the other has diminished.  This is really great because it shows that his body is slowly dissolving them.  

We had a funny/not so funny experience with Ben’s consumption of saltine crackers!

Ben is on a 10 gram of fat diet restriction per day. When they come and take his requests for his meals they are very careful to track each gram of fat.  This makes his diet a little difficult. 

They told him besides the meals he gets delivered to him, he can have the nurses give him juice, popcycles and Saltines.  This is extra good news because Ben has always loved Saltines. 

Well his JP drains started to have too much Chyl in them.  It had just started to increase in the last few days. 

The doctors could not figure it out, he shouldn’t be leaking that much Chyl if his fat intake was low. 

Well Lincoln and I were at the store buying groceries in preparation for Ben coming home.  I went to pick up some Saltines and decided to check the fat content. 1.5 grams of fat in 5 crackers.

Hmmm...  I started wondering how many crackers he had eaten.

So I called him and asked.

He said the team had told him to try and up the volume in his diet.  He isn’t liking the hospital food so he added volume by eating crackers throughout the day.  He said probably 60 crackers yesterday! 

That is 18 GRAMS OF FAT in crackers alone!

When the team came around on rounds we told them we think we found the culprit of the increase in Chyl. 

He proceeded to tell them about his cracker consumption. He’s a hungry boy and Saltines were tasting good to him and the nurses kept giving them to him when he asked. 

The nutritionist was in shock!!  He said they never restrict patients on crackers, apparently they’ve never had a patient who liked crackers enough to eat that many. :-)

Needless to say, he will not be eating crackers for a while.

The good news... Chyl mystery solved!

Ben and his girl ventured off the transplant floor and up to the roof overlook for a few hours today.  The view up there is beautiful.  He enjoyed some sunshine and a change of scenery.

Things are continuing to improve and he’s doing amazingly well.  Here’s hoping for an early week release date!

 

Post Transplant Day 17

Today was another good Day!!  Ben had another CT scan with IV contrast of the abdomen.  They are checking blood flow in the grafts of veins, and blood vessels with the new organs.  They did one of these soon after transplant and discovered Benjamin has a blood clot in one of the donor veins.  It’s not something they’re really worried about, it can’t move anywhere but they wanted to re-check it.  They also wanted to make sure all the other grafts are working well and have no leaks.

Ben also had his first real shower in 17 days!! Hurray!!  We had another post transplant education class, where we learned about symptoms to watch for, for infection and rejection, meds he’ll take and why, also reasons we should call our post transplant coordinator.   Which by the way is any reason that we feel concerned, we should call day or night.  It’s nice to know they don’t send you home and dump you in the deep end.  

Other than that, more walking and playing games with his girl.  Mom and dad had a few hours away from the hospital together getting things ready for Ben to come home.  We see little steps of improvement and positive changes every day!  Looking back at where we were two weeks ago to now, I feel extremely blessed and grateful to see how far he’s come already.  Thank you for the many many prayers, kind words and support you have given and continue to give! 

Our hearts are often drawn to our donor and his/her family as well. Hoping and praying for them. 

Ben’s quote of the day:  “It feels nice to be clean shaven!”

Post Transplant Day 16

 Today was a great day!!  Ben got his 2nd JP drain removed, only two more to go.  Mom didn’t get to be at the hospital today because I woke up with a little sore throat. :-(

Thank goodness Dad is here!  Ben received a unit of blood today because his hemoglobin was in the 7 range and it needs to be above 8.

We had more education from the post transplant team preparing us for care at home.  Otherwise he walked a lot and chatted with anyone he happened to pass.

Ben’s quote of the day: “Can I go home today?”

The doctor turned and looked at him and said “Are you joking with me?

Pictured below you can see where Bens central lines were removed from and where his new one is.

This is Anita, Ben’s transplant coordinator!  She is one of our favorite people!!  She has been with us every minute of this adventure since we first found out we were coming to the Cleveland Clinic.  She arranged about everything under the sun. She is who we called when there was any concern or questions for the last 18 months.  Plus she is the BEST support because she can answer almost any question we have.  And if she can’t she knows who can.  She also knows all the good things to see and do around Cleveland, so she offered us a wealth of ideas for keeping busy. We will miss seeing her every month at our visits.  Once you have transplant you get a new coordinator.  A post transplant coordinator.  I’m sure we will grow to love them too. ;-)

Ben walking his girl to the elevator after her evening visit. 

Post Transplant Day 15

This is his ANGRY face, but really it’s a sign he’s finally got his humor back.

He finally went to radiology and had the veinogram, and they removed all of his existing central lines. According to Ben the twilight sedation he was supposed to have was non existent and he felt it all!!                     Hence the stank face!

He received a new central line on the right side instead of the left, it will be used to administer TPN, some IV antibiotics and for blood draws.  This line is hopefully going to be short term.  The goal is to be off TPN soon and remove the line.  Central lines are a place that transplant patients often get infection, so the goal is always to remove them as soon as they can.  They were not able to remove the blood clot that’s in his left subclavian. The current debate is how to treat the clot, not have it travel and not thin his blood and cause bleeding.  The transplant team also told him they’d like him to eat more volume.  This is NOT going to be a hardship.

Today we played some cards and Yahtzee.  Ben’s quote of the day: “Stinking Little Monsters!”              (He is referring to the radiology team.)

 

Post Transplant Day 14

I can’t believe its been exactly two weeks since transplant!!

We’ve come a long way baby. ;-)

1 JP drain gone and 3 to go.

The JP drains are used to drain fluid from the abdomen.  Ben came out of surgery with 4. The drains are placed to help drain different areas. One goes up near the pancreas, one by the liver, two by the pelvis. When the output decreases they remove them.  These drains also help them to see if he has Chyl leaks.  This is a form of lipid or fatty fluid that your lymphatic system makes.  It is not uncommon for intestinal transplant patients to have Chyl leaks.  They keep patients on very low fat diets until they know they aren’t leaking Chyl into their abdominal cavity.  Chyl leaks will most often heal themselves.  Currently it doesn’t appear that Benjamin has any Chyl leaks. 

Today they removed one of Bens JP drains. This is exciting for all of us, but especially for Ben as sometimes they leak a little around the incision sight and it’s bothersome for him. 

Biopsy 3 was today and still with normal results!  

Today we also started our education for the next phase of recovery at home. 

Ben will continue to have biopsies twice a week for the next few months, these biopsies are the method for detecting rejection in the small intestine.

And, finally they are going to take care of the Venogram and blood clots tomorrow.  Let’s hope they don’t delay this procedure again. 

Ben’s quote of the day: “Can I get a grape popsicle?”

Bens abdomen with four drains.  Two from each sight.

The removed drain.  It was interesting, they just cut a few stitches and pulled that thing right out.  It was in there a lot farther than I thought.  Ben said it felt freakishly weird, because he could feel it moving through his insides as they pulled it out.  He said it was like if someone was pulling a bendy straw out of you... not pleasant.  If you look at the tube you can see a dark line where the stitch was, everything else was inside his abdominal cavity. 

Resting as the sun goes down, listening to music. Ben has been having a really hard time relaxing and has the jitters a lot.  He said the closest thing he can think to describe the way he feels would probably be anxiety, but he’s never had anxiety before so he’s not even sure that’s an accurate description.  But as I watch him, he’s very restless and jittery so I think anxiety is a good description. 

He has found that blocking out all outside noise and listening to music can sometimes help alleviate the anxious feeling. 

We continue to see positive things every day. 

Transplant is not for the weak at heart that is for sure.  I’ve probably said it before, honestly I can’t remember, but recovery is a process for him and for us. 

Even through the tough stuff we feel the blessings of heaven being poured out upon us all every day!

Post Transplant Day 13

What’s missing from this picture?

The IV Pole!!

They decreased Benjamin’s TPN from running 24 hours to 18 hours.  The goal is to get it down to 12 hours before he goes home.  He will probably have to go home on TPN for a short time, until his body starts to maintain weight through oral diet.  

So he enjoyed some time of freedom where he could get up and walk around without pushing a pole.  There are still some concerns with the blood clots, the procedure to take care of those got put off until tomorrow.  He still has 4 abdominal drains but the output from them has decreased substantially.  Hopefully they might remove one or two tomorrow.  Today they also changed him to oral meds for all of his rejection medicine.  They want to see that he can absorb the medicine orally, this is also in preparation for when he is home.  He continues to tolerate a soft diet and he’s in good spirits.  

It was a good day!

 Our surprise from housekeeping today... a butterfly.

They really do a good job trying to make your stay better.

This is how mom is entertaining herself for a good part of the day.  

Game after game of Solitaire. :) 

 

Post Transplant Day 12

Check out those bruised arms!!  This is an improvement, they were worse.  Today Ben’s second biopsy of his small intestine came back as normal no sign of acute rejection.

They advanced his diet to soft foods and he ate mashed potatoes and gravy, diced pears and diced peaches.  He really enjoyed it.

Tomorrow they will work on the blood clots and the removal of his Hickman. Today he and I really reflected a lot on all the things we have to be grateful for and all the many miracles we have seen so far.

Ben’s quote of the day: “Let’s go for a walk.”
Which we literally did at least 12 times.  He is walking laps around the transplant unit!  What a difference a week can make.
Lincoln thought some of you might enjoy pictures of his healthy new intestines. ;-)

Post Transplant Day 11

Today Benjamin got to have clear liquids!!!

Watered down Apple Juice, Jello and chicken broth!

This is another huge milestone.  The best part, it went through his system.

His new intestines seem to be moving!!

Look at this smile in preparation for a good cold drink. 

 The downside to today is that he has developed another blood clot in his left arm.  This will require another venogram and possible procedure to remove it. And they are going to remove his Hickman line which is where the previous clot was located, around the catheter of the line.  They will then put a new Hickman on the right side. Unfortunately he still needs the line for TPN nutrition during this part of recovery. 

Ben’s quote of the day: “mmm that jello is so good!”

Post Transplant Day 10

Today was a pretty good day.  Benjamin is pretty much completely off pain meds!!!  Hurray!

In the last 36 hours he’s probably only had two doses.

He’s walking a lot and he’s moving around a lot better.

He is determined to get those intestines moving, whatever it takes.

Tomorrow is the second biopsy of his new small intestine to check for rejection.  If all goes well he might get to have some clear liquids.  The thought of this really excites him.

Todays the quote of the day comes from one of Ben’s surgeons instead of Ben.

Quote of the day from Dr. Fugiki: “You look Great!”

Look whose sitting Indian style.  This is good!

Ben and Dad!

 He can even hunch over.  All good things when you have a incision the size of his. 

Proof those abs are healing and getting stronger. 

The left arm is no longer wrapped and almost back to normal size. 

He’s becoming an overachiever on the walking! :-)

Today was Valentines Day!  And even though we are spending our days in a hospital and most often in shifts so not together, my husband still managed to get me my favorite thing for a Valentine surprise!  I’m so blessed to have him as mine!

This beautiful sunset ended our good day!

Post Transplant Day 9

Benjamin and his 7 week old nephew also his namesake, Declan Benjamin.

They are both in the hospital, both with tubes on their faces.  Also Ben looks good sitting up in a chair.

Today was a win-win for Benjamin!!  They were able to successfully remove the blood clot from his neck/chest and they did not need to put a stent in his vein.  They also did not remove the Hickman. They were able to remove the clot and leave the Hickman in plane. Win #1!!

Then this afternoon he was able to have his NG tube removed and that got the biggest smile I’ve seen on his face on over a week! Win #2!!

Quote from Ben: “That feels incredible!”

Little Declan is improving as well. Thank you, thank you for all the prayers, they really are working!

Post Transplant Day 8

A lot has happened for Benjamin today.

They did his first contrast study.  They had Benjamin drink contrast and then took a series of x-rays to see how things were moving through the stomach and small intestines.

The bad news...

Things were not moving.  This means there isn’t very much motility in the new organs yet.

It’s not totally uncommon.  Pain medication can slow the intestines.  It sometimes takes a little while for them to wake up after a surgery like this. 

We’re hoping the less pain medicine he takes and the more he is up and moving the motility will increase until its normal.

They did an Venogram on his left shoulder, chest and arm to check on the blood clot.

The blood clot is located around his Hickman line.  The Hickman is his central line that he has had since we first got here to Ohio, they replaced his port-o-cath with it. This is going to require a two hour procedure tomorrow where they go in through his jugular and pull out the Hickman and then a process to keep that vein from collapsing on itself and remove the blood clot.  It is possible they may have to put a stent in the vein depending on how things go. 

And to add icing on the cake... We just found out our 7 week old grandson has to be admitted to the hospital for RSV.

More prayers for Benjamin that the procedure on his veins will be successful and that motility will return to his organs.  Also prayers for our grandson and for our family would be so greatly appreciated.  We truly believe in the power of prayer and we know that miracles happen and blessings come through those prayers. 

Post Transplant Day 7

Gripper socks, compression wraps, and IV tubes are a regular part of our day right now.  I can’t keep track of all the medications they run through his multiple IV lines at any given minute.  

Today was a good day, no bumps in the road today.  They’re still treating and watching the blood clot in his left arm.  He’s breathing good and walking a few steps farther each day.  I am lucky and blessed to have Linc here so we can tag team being with Ben 24/7 And still get rest.

Tomorrow’s a big day, Bens going to drink contrast and they’re going to take images to see how the new organs are doing and how things move.  

It’s been a week of miracles! Prayer is a powerful thing, and I can’t say enough how grateful we are for all of those being offered in our behalf.  We appreciate all the love and support of so many friends and family!

Ben’s quote of the day: “I feel like I have a club for a left arm.”

Post Transplant Day 6

 

Today Benjamin made it out of the room!!  

He walked about 10 steps into the hallway.  In the picture if you look just behind him you can see his room is set back from the hallway about 5 feet. 

This is the first time he’s made it out of that space.

He also had his first biopsy of the small intestine and there were no signs of rejection!!  Happy Day.  

This was excellent news!  We know this doesn’t mean he wont ever have some rejection it just means there isn't any right now.  I’m taking that as a win!

The bad news is his left arm has been very swollen.  They finally did an ultrasound on his neck and arm today and discovered that he has a blood clot.  They put him on heparin to treat the blood clot.  Heparin is a blood thinner, so they are hopping that it doesn’t affect the bleeding he had in his stomach that is currently stopped. 

It’s a Roller Coaster ride we’re on, but it’s one we waited in line for, for a long time, so I remind myself its a blessing just to be on it. 

Ben’s quote of the day: “I’m all sorts of tangled up.”

He’s got a lot of cords and tubes and sometimes it all becomes a tangled mess.

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.