Fibrin

     Last night Sawyer's dialysis machine sounded a "check line" alarm at 3am.  It's not an unusual event.  Typically, this alarm chirps when Sawyer crimps the line attached to his catheter as he tosses and turns through the night. The quick fix...  roll him over, straighten the line and he's good to go.  However, we had no success with this last night.

    
     Everything externally was clear.  So something inside of him was impeding the flow of solution .  It appears that the catheter was clogged with fibrin (a fibrous, protein substance). 

     It was a troublesome moment as he was full of solution and we were not sure if we could get the catheter to drain.  Karen and I both feared another trip to the hospital.  I know we are a little sensitive, but the last time  his catheter clogged, Sawyer ended up back in surgery.

     Eventually, he drained and we did not need to go to the hospital today.  The doctor sent us heparin to inject into his dialysis bags.  Heparin breaks down blood clots and fibrin is a substance that clots blood.  So, this should work well.

     Sawyer gets itchy from head to toe when he has heparin in his system.  I hope he can get through this without the itch.  So please pray for no clogs and no itching tonight.

     Update: Sawyer just went through his first of twelve dialysis cycles.  It was slow, but it worked!  We trust the next nine hours of dialysis will go well and we will all sleep good!

     Thank you for your continued prayer and concern.

Birthday Video



Sawyer and his friends loved watching the video!

     Sawyer received an incredible surprise when many of his friends got together to send him special birthday wishes.   There are two videos.  Only one would upload.  So, I'll try to post the other tommorrow.

     These videos and all of the photography was done by Gloria Duarte. Gloria is a remarkable freelance photographer who spent countless hours putting this project together. Thank you Gloria!

Gloria Duarte:
ghocutt@gmail.com

    

7000

     There are seven thousand children in the United States with End Stage Kidney Disease.  Sawyer is one of the seven thousand. 

     It would be a miracle for Sawyer's kidney's to function again.  As the doctor says, "dead kidneys do not come back to life".  So, we are asking God for a miracle... please bring Sawyer's kidney's back to life. 

     Sawyer is no more deserving of a miracle than the other 6,999 children.  However, we are boldly asking God for His intervention.  He is our only hope.  If He rejuvinates Sawyer's kidney's, we will praise Him.  If He does not, we will praise.  We trust Him with the results.

     There is a huge movement of prayer for Sawyer.  Thank you for lifting him up!  Karen and I are very encouraged by your prayers and support!  

Loving My Neighbor

      My neighbor recently had surgery.  So, being the loving and considerate neighbor that I am, I had a custom ice cream cake made for her from Greenbrier Cold Stone Creamery. 

     Oh, I almost forgot to mention, she and her husband happen to be huge Dallas Cowboys fans...

Hail to the Redskins!

Keep Your Eye On Five

     Today was Sawyer's first soccer game of the year.  He may have been the slowest on the field, but he worked the hardest to get out there.  So good to see him playing! 

Keep your eye on number five.

     Sawyer's team mates really looked after him and showed him a lot of love.  One of many acts of kindness from these incredible kids in the video below.

Good Report!!

Sawyer sitting in one of his favorite birthday gifts.

     We believe the gas pocket, which was causing excruciating pain as it pressed into Sawyer's diaphragm, is GONE.  For the last two days, he has been pain free! 

     This is a huge blessing and relief.   The nagging, sharp pain was taking its toll.  Now, Sawyer is much more active, playful, and regaining his sense of humor.   Love it!

     Here's another good report…   This week, he has had successful dialysis treatments, which really helps with his blood pressure and so much more.  His blood pressure is trending down so much that it is hovering just above a normal range! 

     The dialysis has been going so well that he has been able to reduce the amount of time he is tethered to the machine from 12 hours a day to 10.  Two hours makes a huge difference!

     Although it was a real bummer to have the doctors give up on his kidneys this week, overall, it's been a great week.  Sawyer even played a little soccer yesterday. 

     Karen and I are so grateful for your continued prayers and support.  We know God is listening.  We also trust that He is using Sawyer's kidney failure for His glory and Sawyer's good (and our good too).

Blown Away!



     We are four days past Sawyer's Birthday and we are still opening up stacks of cards and gifts from people all over the country and here in Hampton Roads.  We do not even know 90% of these kind people.

Sawyer and "round one" of the outpouring of cards and gifts

     I don’t have the words to express how grateful and encouraged we are to get a glimpse of how many people are praying for and care about Sawyer. It truly is awesome.

     We are blown away by your love and support.  You have boosted the very soul of my boy and for that I am even more grateful.  Thank you!

Peace

We can feel you move

and cannot stay the same

the winds are blowing strong

God of heaven come

breathe peace

breathe your peace on us

so we might breathe you deep

breathe peace

An excerpt from the song PEACE by the ROBBIE SEAY BAND.  For me, this song gets right to it.

Not so good news...

       We paid a visit to the kidney clinic today. Here's the latest…

     Let's start with the good news. Sawyer is beginning to stabilize. His dialysis continues to improve and it's reaching the doctor's goals. His blood pressure is trending in a good direction and other critical stats (potassium, phosphorus levels, etc.) are looking better as well.

     We are hoping this stabilization ushers in the "new normal" soon. A little less drama would be a good thing. There have been a lot of ups and downs, twists and turns over the last few weeks. We only like rollercoasters at amusement parks. So, we welcome some semblance of routine.

     Now the not so good news… Sawyer's kidney function continues to deteriorate. His kidneys, at best, are functioning at 5%.  Sawyer's doctor has given up on his kidneys and  wants to stop treating them.  She believes continued treatment could bring more harm to Sawyer than good. So, we gave her permission to end treatment.

     This was no surprise to the doctor. She has been preparing us for this outcome since day one.

     Obviously, we are disappointed.  We were hoping for a better result and we still do.   Stopping treatment, or finding a new one, matters little to God if He chooses to intervene and revitalize these kidneys.  So, we will continue to pray hard and trust Him regardless of the outcome.

     Now that Sawyer is stabilizing and treatment of his kidneys is coming to an end, the doctor can turn her attention more to kidney transplantation. Karen and I begin the testing this week to determine if we will be the donors. We are the only donors that the doctors will consider at this time.  The qualification process will take approximately four months.
 
     I know many of you feel like you are on the rollercoaster with us.   Thank you for hanging in there with your support and prayer.  God is using you and we are grateful.

Big Day Part One

There is much to share regarding Sawyer's Birthday Celebration.  So, here is Part One of the Big Day.

     Although Sawyer had a BLAST on his birthday, it started rough.  He had a pain filled morning and he stayed in bed for most of the day because he was nauseated. Yet, he was determinded to get his birthday groove on! He climbed out of bed around 2PM and was ready to party by 3PM.  

Many friends came to celebrate.  Sawyer was showered with gifts and love.  

     Sawyer said his favorite part of the party was smashing the Angry Birds Pinata.