I wanted to write a quick update and let everyone know that Brent and Craig are both doing great.  Recovery is slow but steady and there have not been any problems.  Brent gets blood work done Mondays and Wednesdays and sees his doctor each Wednesday.  Thursday he gets an infusion of Eculizumab which is to prevent the aHUS from coming back and causing damage to the new kidney.  This is the medicine that they toyed around with giving him a year ago, but it was just FDA approved for aHUS a few weeks ago -- again another huge praise. 

We are looking forward to spending a relaxing and quiet Christmas break here with Craig's family.  We will not even have to cook because we were just informed that we won a contest for a free Christmas dinner for 10!  Brent entered a contest by writing a paragraph about someone that deserves to have a free Christmas dinner.  Unbeknownst to me, he wrote why I deserved to have a break from cooking after all we have been through this year, and we won!

 The house looks different with the dialysis machine moved out and we are very happy that dialysis is not a part of our daily ritual anymore.  Our thankfulness is just overflowing.  Craig and his family are our heroes, what a huge blessing.

Brent is home!  His creatinine is down to 1.1 today.  The kids are thrilled and it is so nice not to be down at the hospital all day.  He is tired and very happy. 

"The LORD is good, a refuge in times of trouble.  He cares for those who trust in him...."  Nahum 1:7

 

I just talked to Brent.  They are talking about letting him go as early as tomorrow or Monday.  His creatinine has been staying steady at 1.3 for the last three days, which is on the high end on normal.  Brent was retaining some fluid from surgery so they gave him some Lasix last night (a diuretic) and he took a lot of the fluid off.  He has been up and walking and feeling a lot more mobile.  He even went 12 hours without pain medicine last night.  Craig came up to the room again yesterday and did a lap around the hall with him.  Craig was discharged yesterday afternoon!  My kids are doing well and have had a good couple of days.  Every few days they are drawing antibodies, since Craig wasn't a perfect match, so make sure that Brent isn't creating new antibodies against Craig's kidney.  So far, they have been great, and not elevating at all.

Okay, here is the picture of us.  This was the first meeting of the brothers after surgery.  Continue to pray for Craig, as he has not been feeling great.  Brent has been enjoying his first taste of chocolate and ice cream in over a year, since they were not allowed before.  Our kids had a much better day today which was awesome!  Please pray for me to stop trusting in anything other than God for my well-being.  I am feeling anxious over things like lab values or urine output dropping.  There is a big picture of a dollar bill in the hallway outside of Brent's room, but the words have been changed on the bill to, "In Johns Hopkins we trust."  It hit me that I don't want to trust anything other than God.  In fact, this morning I read three words from the Bible that just reinforce this, "Trust in Him" from psalm 37.  However, sometimes is seems easier to say than to actually do it.  
Thanks for your continued support and prayers

day 2 post op

everything with the kidney is looking great.  the urine output has been good and the creatinine, which measures kidney function, is down to 1.3 which is normal!  the doctors say his kidney is doing bette than average.  brent is still hooked up to  various tubes and lines lines in different places, which bothers him more than anything.  his appetite is really good and he is starting to slowly move around.  last night craig was able to get in a wheelchair and come up for a visit, which was awesome to see him.  brent cant leave the floor because he is so immunosuppressed right now.  here is a picture of them together.

Day 1 - Post-Op

Today was a great day, still producing a lot of urine! Brent's lab numbers are excellent, creatinine is down to 2 (was 4 pre-op) and is trending toward normal.  Both brothers were able to get out of bed and go for a walk around their separate floors. They have not been allowed to see each other yet due to Brent's immunosuppression.

Brent is feeling great.  Not sure if it is the pain med or the high doses of steroids he got today, but his gratitude and praise are very raw.  He feels so thankful for the successful surgery.  He has lots of tubes and bags and meds.  The nurse said he will be on up to 20 different meds a day at first.  Please keep praying that the kidney continues to function well and does not have any rejection or problems.

Craig is moved into his room.  He gets to stay in Marberg, which is where the rich people stay.  I guess they think that if you give up an organ, you deserve to stay in the five-star hotel hospital room.  Really.  Stacy plans to stay with him tonight.  He is struggling with pain and some nausea -- please pray for his night!

On the way home from the hospital tonight I was listening to Chris Tomlin (thanks Kelly!) and heard the song Rejoice that says, "Rejoice, Rejoice Sing with the angel voices.  Rejoice, Rejoice, All heaven and earth rejoice."  And I just felt so thankful for Craig and the doctors and the successful surgery and God sustaining us this year.  And I do feel like rejoicing.

Thank you to all of you for all you have done for us!  We appreciate everything, all the ways you have cared for our family and Craig's family is unbelievable.  You all are wonderful.

Brent is out of surgery. The kidney started working right away! (he is making urine) I should be able to go back and see him in about an hour. The doctors said it was a success. Stacy has been back with Craig and he is in a lot of pain. He will be moving to his room soon.

Craig is out of surgery and it went well! The doctors are sewing the kidney into Brent now. Craig's kidney had two arteries so it might take a little extra time to attach both arteries. They told us they will attach the arteries and vein and then open up the clamps to allow the blood flow to the new kidney. It should immediately start making urine and then they will sew up the ureters to the new kidney. Brent should be done in about an hour anda half. Stacy should be able to go back with Craig in 30 minutes.

craigs surgery started at 7:45.  we got an uppdate at 8:45 that he is doing well.  they are removing his left kidney.  brents surgery started around 9:00.  stacy and i are here with ron and jan pohl, john frain, keyne and jenna.

brent here.  we are waiting for surgery to start.  they have taken craig back. i have been marked with an x where the new kidney goes.  we saw the surgeon just now and he loves my look alike beard.  he says it gives off a cool mojo.  time to go!

Brent goes into the hospital this morning for a full day of pre op procedures.  His surgery is at 8:30 tomorrow morning and should last about 4 hours.  Craig's surgery starts at 7:30 am and lasts about 3 - 4 hours.  Please pray that Brent's body accepts Craig's kidney and it starts working right away.  Craig will be in the hospital about 3 days and Brent will be in 7 - 10 days to make sure the kidney is working well and his medications are all adjusted. 

Please continue to pray for our three kids and Craig and Stacy's 2 kids.  The stress of all that is happening is definitely affecting their behavior and there are lots of concerns.  Please also pray for me, I have been fighting a virus and I just don't seem to be getting better and I feel like I need all the energy I can get right now.

I read this today, and it gave me so much peace, I want to share it with you.  It is from Jesus Calling by Sarah Young:

I am taking care of you.  Feel the warmth and security of being enveloped in My loving Presence.  Every detail of your life is under My control.  Moreover, everything fits into a pattern for good, to those who love Me and are called according to My design and purpose.

Because the world is in an abnormal, fallen condition, people tend to think that chance governs the universe.  Events may seem to occur randomly, with little or no meaning.  People who view the world this way have overlooked one basic fact: the limitations of human understanding.  What you know of the world you inhabit is only the tip of the iceberg.  Submerged beneath the surface of the visible world are mysteries too vast for you to comprehend.  If you could only see how close I am to you and how constantly I work on your behalf, you wold never again dobut that I am wonderfully caring for you.  This is why you must live by faith, not by sight; trusting in My mysterious, majestic Presence.

Craig and Stacy and their two girls (Karis, 9 and Aimee, 7) got in to Baltimore last night.  We enjoyed a fun day here with them today.  Craig is going to the hospital tomorrow for final pre-op testing.  Brent is being admitted to the hospital on Monday December 12 for plasmapheresis (to remove antibodies from his blood to prevent kidney rejection), eculizimab (an infusion to prevent the original blood disease from coming back), and dialysis.  Surgery is at 5:30am on Tuesday morning December 13.  Thank you for your continued prayers for endurance and peace!