Post Transplant Update Week 8

Look at that clean shaven face! ;-)

After 3 long weeks Ben finally got to come home from the hospital today!  He is so happy to be home! 

He is so happy to be home!  He’s doing good.  We’re watching him closely for little fever spikes.  We are both on strict quarantine, to keep Ben away from germs and especially corona germs.

We are excited to watch some movies and just hang out.  We are also really looking forward to General Conference this weekend!

Thanks again from the bottom of our hearts for all the love, support and prayers!

Quote of the week came from Ben came today when he called me to tell me he was getting discharged.

“Mom grab the keys and drive fast!!”

Also a funny quote from his nurse today.

“As soon as I sign this discharge paper...Run!”

Man we love all the great nurses we’ve had. 

Post Transplant Week 7

 

Ben is still in the hospital, it’s been a long 16 days for him!

He’s been treated for an A-typical rejection episode.  Basically and immunological response.

His intestines aren’t showing signs of rejecting in biopsy.  His immune system is attacking his body as a whole because of the new transplanted organs. 

As Lincoln said he spent three days in the ICU because of an adverse reaction to some of the medicine used to treat the rejection.  But he is doing well and his body is responding.  he is not having any more symptoms of rejection.  However, he does have a new blood clot in his new pancreas and still the blood clot my husband mentioned in his right arm.  He’s post transplant enough that they’ve started him on blood thinner to take care of these clots.  We’ve been hoping he would come home each day for the last few days.  WE are starting to think they like him too much so they find reasons to keep him.  His white blood cell count is low at 1.2.  They do not want him going home with a white blood cell count that low.  Their giving him a drug today called Nupogen that helps increase the white blood cell count.  If all goes well he can come home tomorrow.  Dad went home today and we miss him already!

The good news is they took him off the fat restriction in his diet to see how his body responds, he is looking forward to some Mac & Cheese for dinner tonight and a little more variety in his food.

This picture his a selfie because Benjamin has not been allowed visitors since last week.  When dad was still here they started restricting visiting to certain hours and making them check in and have their temp taken on entrance.  So we knew total restriction was coming.  The hospital is completely shut down for visitors.  This may seem harsh but we’re grateful they’re doing everything they can to keep our loved ones safe and healthy.

He is in good spirits and we’re hopeful he’ll be out of the hospital soon and stay out for a good long time!

Like Forever! ;-)

I asked him if he is very lonely?  He replied,

“Oh I’m just socializing with all the nurses and techs.”

No surprise there he’s a social kind of guy! 

Now... If only I could convince him to shave!

Flying during a pandemic!

I was so surprised by the empty flights on my return trip to Ohio.

It is absolutely crazy the difference a few weeks makes.

My first flight from Utah to Detroit was a big plane and had about 30 people on the flight.

There was no concern about sitting by anyone.

My second flight, a smaller plane from Detroit to Cleveland had 7 people on it.

SEVEN???!!!

Delta your are a rockstar, because I know you had to have taken a loss on these flights. 

But thank you for getting me back to Ohio safely and on time.

                                     There were a lot of cancelled flights by many other airlines.

When I arrived in Cleveland and went out to passenger pick up to find Lincoln, I almost felt like I was in the wrong place. He was literally the only car there!  This airport pick up is usually packed with cars parked 3 deep.  It truly was the weirdest feeling, and I don’t think its going to end soon. :/

A visit home in a world gone mad...

I just spent a wonderful 2 weeks in Utah, doing quarantine with my girls and grandbabies!

When I left Ohio quarantine hadn’t really started yet. 

The day before I left Utah to return back to Ohio, I witnessed this beautiful rainbow out my back door.  Nothing like a rainbow to remind me that there is hope on the horizon and there is still beauty in the world. 

Let’s take a step back two weeks to the beginning of my trip home: 

It’s crazy how fast the world can go topsy turvy.  The day before I left Ohio, Lincoln and I went grocery shopping to Walmart to pick up what he would need while I was gone and to amp up our supplies of low fat foods for Ben so when he gets released from the hospital we would be stocked up.  I arrived in Utah on the morning of March 12th and that afternoon I went to the local grocery store to pick up groceries for BBQ’s and meals to share with my kids for the next few weeks.  I was in for the shock of my life!  What a difference a day can make, and a location.  It was 2:00pm in the afternoon and the shelves were bare!  I mean bare!  It was the oddest feeling, just yesterday in Ohio there wasn’t a sign at all that we were about to enter the twilight zone. I guess it’s the mentality of the population in Utah... be prepared.   Although that would give the impression that we are all prepared and don’t need to make a run on the supermarket at the first sign of trouble.  I found this a tiny bit disturbing to be honest. Needless to say it was difficult just to buy the things I needed.  This was the first sign that my time home was going to be like nothing before.  Public Schools were canceled and my daughter attending UVU was told face to face classes were cancelled until after spring break. Then to top it all off on the 18th we experienced a 5.7 magnitude earthquake. It was official, things were shaken up and we were now living in a world gone mad! 

Despite the craziness of the world, I enjoyed my time with my girls and babies.  We spent a lot of time just hanging out at home.  Quarantine being in effect and all.  I enjoyed walks around the neighborhood, sitting in my backyard and breathing in the fresh air. Loving on my little ones is a great boost to the soul. 

At one point in my visit home, I became full of anxiety about what was going on in Ohio with Ben and feeling helpless.  I became so upset, that I decided I needed a blessing for guidance and comfort.  A dear friend from the ward came and with the help of Brooklyns friend Jacob they gave me the most beautiful blessing.  In it I was reminded at the many miracles we have seen in our family over the past year and that Heavenly Father is in charge and miracles have not ceased.  I know Heavenly Father loves us, I know my Savior lives. I know he is aware of me personally and of my fears and if I will seek him, I will feel of his love and have peace in my life. I am so grateful for the priesthood here on the earth and for the blessing it is in my life. I am also thankful for the power of prayer.  Many times I have dropped to my knees in prayer, prayer of thanksgiving, prayer of pleading and often just a prayer of sharing my thoughts and feelings.  Every time I feel the love of my Heavenly Father, and a peace settles on me that he hears me and is there for me. Over the past year or so I know there have been many prayers offered by others on our behalf and we have felt strength from those prayers.  

This blessing I received was just what I needed to give me calm and allow me to enjoy the remainder of my visit home. Here are a few pictures of my time. We celebrated my birthday, Bailee make me the most delicious cake! So much LOVE! 

Too soon my time home came to an end, I am going to miss my family but I need to get back to Ohio and Ben while I still can. Even though things are a little rough in the world, we have a lot to be grateful for!

Baby D.

Me and my girls.

Yummy Cake

                                                                                

                                                                               Ollie

 

Post Transplant Week 6 - Rejection Episode, Escape from the SICU

 Posted by Lincoln

We have escaped from the SICU (surgical icu).  It was a long stressful 3 days.  Ben is doin much better and his rejection episode seems to be dying down. He was excited to get back up to the transplant floor.  It feels good just to have a window and know that thee is life outside.   We both got to the room and just sat and enjoyed the view and our time together.

Ben has new blood clots in his right arm.  they are small and for now the team is watching them to see if they will self resolve.  We still. Have a few days before he will be discharged if all goes well.  We are ver appreciative of our transplant team.  The nurses are awesome and we are thankful for their care.

Transplant Update Week 5 - Rejection Episode

Posted By Lincoln

 

I’m not nearly as good a this posting as my wife is.  I’m out here with Ben while my wife gets a small visit home to see the kids.  

Just a Ben update:  He has digressed a bit and has gone from a normal room on the transplant floor to the SICU (Surgical Intensive Care Unit).  The doctors believe he is going through an atypical rejection episode.  On top of that he had a very bad allergic reaction to one of the meds they gave him to treat the rejection. It’s been a rough couple of days.  The doctors are optimistic as are we.  They told us that some transplant patients, especially modified multi visceral transplants will go through a rejection episode.  He is still smiling even though he is in pain.  We are hoping and praying that he will pull out of this quickly.

Rejection and COVID19

Our hospital room with a view.  They are still running a lot of tests on Benjamin.  His biopsy they did yesterday came back good.  No sign of rejection in the small intestine.  He is still having a problem with his temperature.  He will have a high fever and then it goes away and then it comes back again.  He is also having pain in his lower back and the headaches.  They are trying to figure out if the headaches, lower back pain and fevers are related.

Lincoln arrives in Cleveland tonight and I am supposed to go home to Utah tomorrow. It’s hard for me to decide what to do.  They wont let visitors stay the night with Ben because of the rising COVID threat.  Lincoln thinks I should go home as planned because he feels I need a break from the caregiver role.  I of course am torn, I really want to go home and see my girls and grand babies.  Travel right now is a little risky and I worry  I will be in Utah and will be needed here in Ohio.  Lincoln says if that’s the case I can hop a plane back at any moment.  So it seems as if Dad will be the support here for the next 2 weeks and I will go home to Utah for a visit. 

The doctors are leaning towards Benjamins symptoms being a possible rejection episode. When they first told me this I had a minor freak out.  Rejection is a very scary word.  We have been under the impression that rejection is always really bad!  The doctor told me today, that almost all patients reject in some form or another at one time or another.  He asked if this was Bens first rejection episode.  I said, well he was only home from the hospital for 2 weeks.  He assured me they would be able to adjust his meds and figure it out.  

Ben and I decided that we would really like him to receive a priesthood blessing.  A few members of our stake are Doctors here in the Cleveland Clinic and one is even a member of our ward.  His wife Emily Keller has told me often if we need anything to reach out.  So I called her and asked if she thought her husband could track the other member down and come administer to Ben?  She called me back and said her husband would come to Bens room as soon as he could.  About an hour later the full time missionaries that serve in the Singles ward came into Bens room.  They told us they were there to give Ben a blessing.  They told me it was an interesting story on how they came to be there.  

The missionaries had been at a district meeting in a town south of here and on their way home to their apartment felt like they should pop by the Cleveland Clinic to check on someone.  While they were finding their way to this persons room they rounded a corner and ran into Brother Keller. He told them it was great that he ran into them and said that Benjamin was in the hospital and in need of a blessing but he was having a hard time tracking down someone to help him.  Could the missionaries go up and administer to Ben. The missionaries felt like they had been guided to the Cleveland Clinic on an errand so that they would be available to come give Ben a blessing.  I too felt so much gratitude for the prompting they had to make a stop at the hospital right when we needed them.  They gave him a beautiful much needed blessing.

I really have to dig deep and rely on my faith.  Heavenly Father has brought us this far, I have to remain strong in my knowledge that he has a plan for Ben and to be patient.  I also have to remember that his plan is not always my plan, and that is sometimes easier said than done. 

Ben continues to remain positive.

Post Transplant Week 5

I’d like to say these pictures are a joke....  but alas they’re not!  Ben is back in the hospital.  Yesterday we came in for his normal weekly scope to check for rejection and after the scope we headed over for his blood draws and our bi-weekly appointment with the transplant team.

Before the scope all of his vitals were normal, but by the time we got to our Dr. appointment he was spiking a temperature of 102.7!  I couldn’t believe it!!!  Not even 2 hours before it was fine.  All weekend he’d been having a splitting headache but otherwise felt fine.  No temp, and believe me it gets taken often.  They were attributing his headaches to his Prograf level being a little high. (Prograf=anti rejection med)  His level being high wasn’t alarming, he’s just absorbing really well and they can adjust his dose down.

Anyway a fever of 100.3 means being admitted to the hospital.  No matter what!  We know this, so the second it came back high I knew they would be admitting him.  They sent us to the ER because they didn’t have a bed available for direct admitting, but they wanted to get started right away on testing and finding the cause of the fever.  Now I was not thrilled about this because COVID19 has just started making an appearance in cases here in Ohio and I felt like the ER waiting room is a cesspool of germs.  Nevertheless we went there.  Luckily they took him back quite quickly. 

Security is pretty tight in the ER, so we had to go through the metal detector and I had to wear this lovely visitor badge. 

It didn’t take too long to have a room available up on the transplant floor and they moved us up there as soon as they could.  They immediately removed his central line and gave him an IJ line in his neck and started 4 types of IV antibiotics.  This is common procedure, thinking most often a fever is a sign of infection and the central lines are often the culprit.  They ran a Myriad of tests to try to find the source of possible infection or rejection.  The Jury is still out.  He feels fine and the fevers gone.  Hopefully its just a little speed bump in the road to recovery and it will be a short stay. Say a prayer please. 

At least he gets a private room.  There are shared rooms and private rooms on the transplant floor.  Patients with his type of transplant are a priority to have a private room because their immune system is so suppressed. 

Somehow... he still manages a smile.

 

Post Transplant Week 4

 

Ben has been home from the hospital for one week today!

It has been a week of adjusting and appointments.  

We’ve had to learn to sort medicine and follow a strict schedule for taking pills and tracking EVERYTHING!

Bens phone is full of alarm reminders.

Last week we were back in to the clinic on Thursday and Friday for scope with biopsy, blood draws and albumin infusions.  He has weekly blood draws every Monday.  Depending on the levels in his blood determines if he has to adjust his meds and have any sort of infusions.  We knew this first bit would be about finding the sweet spot as far as his medicine levels and vitimin/element levels.

These days were long. 

We then enjoyed a quiet weekend home.

Then it was back to the clinic Monday for blood draws, Tuesday for Scope and a visit with the transplant team.  We’re hopeful soon we'll only be going on Mondays and Thursdays.

He still shows no signs of rejection, which has allowed them to drop his anti-rejection med levels a little. 

He had an ultrasound today to check on the blood clot in his jugular and it is showing significant improvement and hasn’t moved.  This is fantastic news!

He still has his 2 JP drains from his abdomen.  These are the things that bother him the most because they have a tendency to leak.  

We are both housebound for the most part.  He is required to have someone home with  him 24/7 for a few weeks.  I think he would enjoy some mom free time.

We both have to avoid large crowds for now, so no church for us.  But never fear the ward is taking care of us and bringing us the sacrament each week.

Being home and sleeping in his own bed has helped and we’re grateful for the positive steps forward! Everything has been improving! 

Today I found myself reflecting again on where we are and how we got to this point. It felt like we waited forever for transplant to finally come.  Before transplant I couldn’t even see what the future was going to be like.  Then we had transplant, and wow how grateful I am for modern medicine and to live in a country where that modern medicine is available.  To be blessed because my husband has a job that provides affordable insurance and that insurance is covering Ben’s healthcare.  I am also amazed at the human body and how resilient it is!

WE truly are blessed!  Sometimes its easy to take for granted the small and simple blessings we have in our lives.

Ben’s quote of the week: “What shall we watch now?”