A glimpse at love and support... and a little update

Over the past 3 months Ben and I have received so many cards, letters and packages of love and support.  It as been so fun to read and smile when these uplifting messages have arrived. A big thank you to all those who gathered these fun messages and sent them to us.  Some were from the primary class children in our ward in Utah, others from my friends school class children, some from my co-workers at North Star Academy, cards and a care package to help us survive the hospital from the members of the Kirtland Ward and many other cards ,letter and phone calls from friends and family.  We are indeed surrounded by wonderful people! 

Ben only spent two days in the hospital and is home and well.  I picked him up just like I dropped him off, pull up to the curb and they wheeled him out. 

When he first arrived he had to go to a medical patient floor and get a COVID test.  Once the test came back negative then he was moved to the transplant floor. They stopped his blood thinner and gave him a few units of blood.  His hemoglobin came up to about 8 and they let him go home.  They determined the bleeding was due to the thinner.  It stopped almost immediately.  They also gave him a scope while he was in the hospital and it came back with no signs of rejection. 

He loved not having that shot in his leg.  His poor thighs have great big bruises on them from giving himself that shot.  We know they are going to start him back on them soon, just a lower dose.  Unfortunately he still needs the blood thinner to continue to treat him for the other blood clots he developed. 

We’re looking forward to a visit from Dad in a few weeks and a short visit home for Mom.  We continue to quarantine... as is the rest of the world.  Thank goodness for streaming services, FaceTime, ebooks and puzzles. 

Post Transplant Week 11

Let me begin by saying I’m sorry I have been a slacker with the transplant updates.  I find myself slightly overwhelmed by the quarantine.  Today found me dropping Ben off at the hospital door for admittance. :/

It’s a terrible thing to take a loved one to the hospital and watch them walk away like you’ve taken them to the airport.  I feel like I should be there with him, but this time of Covid19 has us all doing hard things.

Ben has been home for 3 weeks and has been doing well.  Post transplant really is a lot of 3 steps forward and 1 step back.  Most of the current downs come from reactions to meds.  Ben is eating and drinking and believe me he is enjoying his food.  I feel like if I had to say what his favorite thing to eat is lately, I would say peanut butter and grape jelly sandwiches. We literally go though a small jar of peanut butter and a large jar of grape jelly in about a week. 

His body is absorbing nutrients and this is a great thing!  His transplanted small intestine is doing it’s job!  He has not had any more signs of A-typical rejection which is also good.  His biggest problem of late has been swelling in his feet, legs and hands.  This seems to be a side effect from the heavy dose of steroids they give home to suppress his immune system.  He currently takes 30mg of hydrocortisone 3 times a day. He is still getting blood thinner vi a shot in his leg every day.  However, this weekend he started to notice blood in his stool.  Today when he went in for his weekly blood draw his hemoglobin was 6.2. NO BUENO. The low hemoglobin and the sign of blood is the purpose for his admission into the hospital.  Their short term plans is to give him a few units of blood to help his hemoglobin number recover and then try and determine the cause of the bleeding. The hospital is not the place to be right now, but hopefully it will not be a long stay. 

 A few days ago he hit a small milestone, they released him to drive for the first time since February.  It was really good for him to feel a little independence.  We continue to look positively to the future, we feel very blessed and we continue to have faith in Heavenly Fathers plan for Benjamin and our family.

Selfie from his hospital bed.

First time behind the wheel since before transplant.

Easter Sunday

Ben and I are grateful he’s home and still feeling good.

He is being treated with a really high dose of steroid, which causes some issues but otherwise he’s doing good. 

We enjoyed a quiet Easter Sunday together.

Definitely missing family today, but grateful for my Savior, for all he has given me, that I might enjoy the blessings of my families fo eternity.