Big Pig Smasher

Sawyer just received this huge Angry Bird from his eye doctor. Wow!  Now he can smash some pigs, a few brothers,  and the mountain where the biggest pig sits.  He loves it!

Update 09/30/11

     Good news today…

     The heparin worked last night. Sawyer had no clogs in his catheter and no itching.   He will remain on a heparin regimen for a couple of days.

     Sawyer is now down to two blood pressure medicines!  His blood pressure has improved so much that he can do away with his patch.  We are so grateful!

     Sawyer still takes many different types of medicines and recently he has refused to take them.  It has been a huge fight morning and night to get him to cooperate.  One day it took two hours to get his meds into him.

     It's good that he is a fighter.  He needs to be for this challenge and all that lies ahead.  However, now it takes much more than a spoonful of sugar to make the medicine go down. 

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.

birth day.

In honor of the big monkey's 5th birthday, here's a look back to his birth day.

Early B-Day Present

     Sawyer has been thinking about his 5th birthday celebration ever since his 4th. So, you know he was excited about a few gifts prior to tomorrow's big event.

     A Mickey Mouse pull out couch to sit on top of his bed and a Cars lap desk. These things should help make daily dialysis a little more tolerable.

Today's Update:
Sawyer felt like it looked outside,rainy and dreary, with occasional pain storms. Pain, pain go away. Don't come again another day.

Huge Relief!

     Sawyer had no pain in his shoulders at the end of dialysis this morning!!  Huge relief!  Assuming it was indeed a gas bubble from his surgery, Sawyer's doctor advised us to place him face down with his head lower than his feet during the final drain of his dialysis.  It worked!  The pain did travel to his pelvis, but the intensity was DRAMATICALLY LESS.

     X-rays today confirmed a huge gas bubble pressing up high into his abdomen.  We are not sure when it will dissipate, but we are grateful the pain does not originate from a more troubling source.  

     Grateful for a victory!  Now, back to the mountain that jumps into the sea.

"Will you pray for me that it won't hurt?"

     As he was falling asleep tonight, Sawyer said to Karen, "I really don't want it to hurt again tomorrow morning".  Then he asked, "Will you pray for me that it won't hurt?" 

     Tomorrow, Sawyer will get more x-rays to confirm the majority of his pain is still coming from a gas bubble that formed during his last surgery.  I share this so that you know how to specifically pray.

     Karen and I have been blown away from the reports of so many prayers from all over the world. There is a huge movement of prayer happening for Sawyer. Thank you for praying and caring so much!  Jesus knows my boy and He is listening.  

     FYI... Our niece, Chelsea Gaab, started a facebook group called "Praying for Sawyer".  If you would like to join this group, click here.  

Sawyer Loves School!

     Sawyer loved school today! He was the first one to raise his hand  and he participated with much enthusiasm.

     His preschool lasts for two hours.  He hung in there for the 1st hour, being as active as he could be, but did not have the energy during hour two.  Sawyer attends a preschool co-op for home schoolers that meets one time a week.  Hopefully, he'll have more strength and energy next week.

     Sawyer was enrolled at Greenbrier Weekday Preschool.  All of our other kids attended this school and were taught by Mrs. Harrison.  Mrs. Harrison is an incredible teacher and we wanted to continue the tradition. Unfortunately, Sawyer is not healthy enough at this point.  Karen can stay closer to him and give him the care he needs at the co-op. 

     Sawyer loved meeting his new friends and teachers today!  Although he has not been able to get far from the couch for the rest of the day, it was still a great day.

Haven't Got Time for The Pain.

Although Sawyer had an intense amount of pain at the end of his dialysis and throughout the morning, he was very excited to start his first day of pre-school.  Tough guy!



Notice shoes come after
 lunch box and "kak-pac".

He may not look like it, but he's excited.

FIVE!

Sawyer turns FIVE years old this Sunday!

     He has requested an Angry Birds theme for his birthday party. I guess he'd like to take out a little frustration on some pigs.  Who could blame him? Plus, it's better to go after the pigs than his brothers!

     I heard through the rumor mill that Sawyer's CPC family was collecting birthday cards for him.  If you would like to send Sawyer a card, use this address:

     Sawyer DeBause

     c/o CPC

     1021 Eden Way N

     Suite 116

     Chesapeake, VA 23320

        

     I know I'm posting this late, but I just found out about the card campaign.  Don’t worry, he will not refuse any late birthday wishes.

Today's Update:

     Sawyer is still having a lot of pain.  This morning he had a horrible episode that was very intense.  Although he is still sore from the manipulation during the surgery, the doctor believes there is a gas bubble irritating his diaphragm and displacing the pain to his shoulders.  This is very common after surgery.  

     Karen is doing her best to get him active to disperse the gas but, the pain meds knock him out.  So, she gets him moving in between the naps.

One Request

     Sawyer only had one request on the way home from the hospital yesterday.  It was an easy one…

Update 09/13/2011

     Sawyer's blood pressure continues to improve.  This is great news and we are grateful to see this trend continue!

     His dialysis did not do as well as we had hoped last night.  We are making another adjustment to his dialysis for tonight's treatment.  The CHKD Kidney Clinic is committed to finding the best dialysis treatment for Sawyer.  We're so grateful for their diligent and compassionate care.

      Sawyer does not feel so great today.  He still has the post-op pain.  The pain meds do a good job of giving him some relief, but it makes him groggy. 

      It was good to be home last night with the whole family.

dis-CHARGE!

Waiting to go HOME!

     Dr. R believes Sawyer's pain stems from his operation.  He had significant manipulation in his belly by removing almost all of his omentum and moving the catheter into his pelvis.  Also, there is a gas bubble that may be causing some of it.

     We should be leaving the hospital within the next hour!

     Some of you are asking about his blood pressure.  It's still an issue, but trending downward with good dialysis.  Nothing to stay hospitlized over.  Again, we are running a marathon here.  It''s good to get some momentum today after a few tough miles.  He sustains us all of the way.     

Sawyer's Agenda 09/12/2011

8AM:  End Dialysis Session

10AM: Drink 150ml of Sweet Tea

10:30AM: X-ray Tummy (to determine source of ongoing pain)

11:30AM: Beg Dr. R to go home

2:30PM: Play a few rounds of Angry Birds @ Home (We hope.)

3:30PM: Enjoy a Slurpee, Pain Med flavor... Yum!

3:35PM: ZZZZZzzzzzzz

6PM: Start New Dialysis Session

Tummy X-ray. Cool Spiderman socks!!

Still in the Hospital

     Still in the hospital.  Sawyer is not bouncing back from yesterday's surgery as well as he did the first procedure two weeks ago.  He is very tired today and in a lot of pain.

    He continues to get regular rounds of pain meds and typically sleeps once they start kicking in. 

     Sawyer's dialysis went very well last night and, as hoped, his blood pressure reduced to more tolerable levels.  It's still high, but  better. 

     A good dialysis also removes a lot of fluid.  Now Sawyer does not look as bloated as when he first arrived.  He was looking pretty rough.

     Sawyer may go home tomorrow.  He needs another good dialysis tonight and they want to be sure the pain subsides and no infection is setting in.  Peritonitis is wicked stuff.  No real fear that we are heading in that direction. Just being cautious.

SD Luvs Pain Meds

     Sawyer is enjoying his pain meds right now.  He has had a lot of belly pain post-surgery.  The pain is worse than when the peritoneal catheter was first  put in, which makes sense as this procedure appeared to be a bit more invasive.

     Dialysis is going strong.  Huge relief.  If this procedure today is the solution to his dialysis woes, we could be on the path to better blood pressure trends.

     We would be fools not to recognize God all throughout this day.  He is real and making Himself known.  So grateful.  Obviously, we wish we were never on this path.  We want Sawyer healed and  this bad dream to end.  However, we are more aware of His presence and provision like never before.  So, here's the irony… this royally stinks and smells sweet all at the same time.  Crazy, but true.

     We know people were on their knees in prayer for our boy today and stepping up to bring relief to our family in many ways.  Remarkable. We are so grateful for you!

     Now, I'm off to figure out how I can manipulate this chair to get some sleep tonight.  #delusionalDadInRoom827#

NOT a recliner.

Out of Surgery

The surgeon has just finished with Sawyer.  He will be in recovery soon.  The surgeon found that omentum was clogging his catheter and pulling it out of its proper position.  The omentum was removed and the catheter was repositioned.

 Looking forward to seeing and feeding our boy in a few minutes.

Surgery in the Morning

     Sawyer returned from CHKD earlier this evening after they were able to lower his blood pressure.  It's still high, but not as dangerously high as it has been these last few days. 

     Unfortunately, we will be headed back to the hospital early in the moring.  During dialysis tonight, Sawyer started having pain in his left shoulder and belly. It continued throughout the evening.  Around 9PM, the pain became excruciating. Sawyer was inconsolable as he was screaming, crying out, and literally begging for relief. 

    Sawyer's doctor believes his peritoneal catheter has become displaced, possibly hitting his spleen. This will cause great pain as we now know.  She scheduled him for surgery in the morning (Saturday) to reposition the catheter in his abdomen. 

Eventually, the pain did subside after we pulled the plug on his dialysis. However, It was an awful, heart-wrenching sight watching my boy struggle tonight.  I'm getting angry and unsettled  again just thinking about it. 

      Please Lord.  Have mercy on my son.  Free him from this horrible thing that has him pinned down. No more, please.

Back to CHKD

     Sawyer's blood pressure continues its steady climb  upwards.  So, he is headed back to CHKD this morning.  Sawyer's doctor is bringing him in for observation while they do an aggressive dialysis treatment to remove more fluid .  Sawyer is not being admitted. We hope to have him back home this evening or sooner.  

     If you have been following our blog this week, this is probably no surprise.   Although we hate the ascending blood pressure, we are grateful for the intervention especially when it does not involve more prescriptions.

     Regardless of a few clouds in the sky today, I sense it's going to be a good day.  I'm no prophet.  So, I'll update you later to let you know how it all turns out.  One thing is certain… none of this escapes God.  He's got this thing fully in His grip.

Sawyer and Sooner

Sawyer and Sooner

     During Sawyer's stay at CHKD, he loved to get visits from the dogs in the Buddy Brigade  Each dog even had their own personalized trading card, which Sawyer loved to collect.

Today's Update:

     Sawyer's blood pressure still remains too high.  The new meds have not yet "kicked in". The doctor's are well aware and following us closely.  We are grateful for their care and competence. We continue to pray his BP drops soon.  Thank you for praying with us!

Taming the BP

     Taming Sawyer's blood pressure is a battle royal.   We had to go back to CHKD today because his blood pressure (BP) continues to be way too high.  They ran more blood tests and have adjusted his prescriptions again.  

     We hope this new regimen of meds wrestles Sawyer's BP into a normal range or at least close to normal.  Sawyer's doctor continues the mantra, "Nothing is typical with Sawyer!" 

     We did get some good news from the blood tests.  His liver enzymes have reduced  to almost normal levels.  This is a big relief.  The doctor now feels confident that the levels were elevated because of another BP medication that we stopped using days ago.

     On another positive note, Sawyer has been laughing today.  He has not done that in a while.  If you know Sawyer, he is typically full of laughter. However, he has only given us a few smiles on occasion until today.  It's great to see glimpses of my boy and looking forward to the day he is with us fulltime.

Candid

    Sawyer's blood pressure (BP) continues to be an issue.  His doctor is concerned and working very hard to help stabilize him.  Today they added another BP medication and we are making more adjustments to his dialysis tonight and tomorrow. 

     All of this is taking it's toll on Sawyer.  He is very bloated, depressed, and feels horrible.   Some of this stems from the steroids.  However, the hypertension must get controlled or something worse could happen.

     We are not panicked and do not live in a spirit of fear.  I am being candid so that you will know how to pray.

     We are leaning way into God and our confidence rests in Him.  He has made great provision for Sawyer through the CHKD Kidney Team.  These are remarkably competent and caring people.  We are truly blessed to be in their care and anticipate better days ahead soon.

     This battle is vicious and non-stop.  Thank you for your continued prayer.  We are blown away by the reports of how many people are praying for our boy.  I don’t have the words to express how grateful we are for your care, concern and support.

Struck Out.

Sawyer made it to the Tides last baseball game today.  However, we could only stay about 40 minutes.  Soon after we arrived, his blood pressure (BP) elevated to a dangerously high level.

     We gave him his emergency BP med and started out to the emergency room.   The BP med kicked in quickly, reducing his BP and we were able to connect with our doctor.  So we opted out of the trip to the hospital, but his BP  was still too high to risk staying at the game.  Plus, Sawyer was wiped out after that episode.

     The good news is the Tides  hit 4 home runs in the one inning  we were able to watch.  Very cool! 

     It was a short trip, but Sawyer came alive with anticipation before the game and he was grateful for the time he had there. 

     At this point, Sawyer is not stable enough for much activity.  This will most likely delay his start of preschool and soccer this week.  However, we will keep working hard towards his recovery and take it one day at a time.  We are trusting God for wisdom and discernment as we go. 

     Thanks for cheering for my boy today.