Surgery Tomorrow Morning

     Sawyer has his G-Tube surgery early tomorrow morning.  We would greatly appreciate your prayers for Sawyer and the doctors. 

     Within the next hour, Karen and I are going to tell Sawyer about the surgery.  We have learned that hours of anxiety is better than days.   As anyone could understand, he will not be receptive to having something else surgically attached to his body. 

    After we break the news, we are going to party with Sawyer's favorite Cold Stone Ice cream (cotton candy) and his choice of movie (Kung Fu Panda 2).  We will party by his bedside tonight  because we have to start dialysis extra early.  He needs to get the full 10 hours of dialysis prior to check-in at the hospital before the crack of dawn.

     As you pray for Sawyer tonight, please ask for peace in his heart.  He is a tough little guy, but he processes all of this stuff.  Karen and I have been burdened all day as we face the reality of this procedure and telling him about it.   So we'd appreciate your prayers too. 

Transplant Factoid #2

Transplant Factoid #2

     Karen's surgery will be performed at Norfolk General.  Sawyer's will be at the Children's Hospital of the King's Daughters (CHKD).  

There is a "secret passage" between Norfolk General Hospital and CHKD.   The transplant surgeon will use this passage to personally escort Karen's kidney to Sawyer.   

I hope he let's me be a part of the security detail.  I won’t need a gun.

Update:

     We met with the genetics doctor at CHKD for the first time yesterday.  She is a sensitive, caring and brilliant doctor.  Although we left with more questions than answers, we believe she will find the answers that will ultimately identify Sawyer's genetic syndrome.

     We thank God for His provision of incredible medical professionals.  Sawyer gets remarkable care!  

Factoids and Hiccups

     We met with the transplant surgeon for the first time on Friday.  Many questions were answered and we learned even more about kidney transplantation. 

I don’t have time now to write much, but over the next few days,  I'll post a series of "Transplant Factoids" sharing specific details regarding Karen and Sawyer's upcoming surgery and kidney transplantation in general.

The Transplant Factoids will be in no particular order.  However, today's factoid sheds a little light on the question we get asked the most.

Transplant Factoid #1:

The transplant surgery will happen soon (very soon) after Karen is cleared to be the donor.   

     I know... you want to know that date.  So do we! 

     Although Karen is a match to be the donor of Sawyer's new kidney,  she is taking an extensive battery of tests (blood and urine tests, cat-scan, etc.) to be sure that she and her kidney are healthy enough for the surgery.

     Unfortunately, two of her tests recently came back with results that  could potentially disqualify her as the donor.  We are hoping and praying that these results are just a few hiccups along this path as Karen is re-taking the tests this week.

     Obviously, there are concerns for Karen's health and the upcoming surgery, but several doctors have encouraged us to not be troubled by the recent results.  We like that advice!  So, we have been doing our best to not think about it and looking ahead to the re-tests.

     We will share more of the details once we get the new results.  I hope this helps you to know better how to pray.  Thank you for your prayers!  More Transplant Factoids to come.

G-Tube

     I mentioned in the last posting that Sawyer will have a preliminary procedure prior to his kidney transplant surgery.  Today we met with the surgeon at CHKD to discuss this procedure.

     Within the next few weeks, Sawyer will have a Gastrostomy Tube (G-Tube) placed in his abdomen.  It is also known as a feeding tube, but this is not its purpose. 

     As I have shared in the past, Sawyer is a fighter.  This is a great trait considering the road ahead, but there are moments when it does not work to his advantage.  It is very difficult (sometimes impossible) to get him to take any medicine in any form regardless of the taste.  We have tried EVERY trick in the book (even cold-hard-cash) but he resists.

     After transplantation, Sawyer MUST take his meds -- every drop or pill--  exactly as it is prescribed.  If Sawyer does not gets his meds as prescribed, he is at great risk of losing the new kidney.   Sawyer will take his meds through this G-Tube.

     It breaks our hearts (understated) to know Sawyer is facing another procedure with something else poking out of him as a result.  However, considering the circumstances, the G-Tube surgery is unavoidable. 

     Because Sawyer has had several surgeries, there is some concern that there will be scar tissue that will complicate the G-Tube surgery.  So please pray with us that the surgeon will not be impeded by scar tissue. 

     Also starting today, Sawyer's doctor is putting him back on one of his blood pressure meds.  His blood pressure has been trending up for a while.  So, hopefully, these meds will help to get it back under control soon. 

The Hero and The Jump

   

     On New Year's Eve night, the DeBause family broke with tradition by giving up Dick Clark for ESPN's special coverage of Levi LaVallee jumping a 300ft gap of water with a snowmobile.  He actually jumped 412ft to shatter his own world record of 361ft.  Who knew a snowmobile could fly so far?!?

     This was a fitting way for the DeBause family to bring in the New Year considering the "jump" that lies ahead for us within the next few months.  In February or March, Sawyer will undergo a kidney transplant and these weeks prior will bring about a flurry of challenges and activities in preparation for this big event.

     The news for today is Sawyer's mom, my beautiful wife Karen, will be the one to donate the kidney.

     Every morning (even to this day) when Sawyer wakes up, he shouts out  for "momma" to come get him.  He has been doing this since birth.  Of course, he could not use words  as an infant, but we always knew who he preferred to lift him out of the crib.

     Anytime I get to his bedside first, Karen usually arrives moments later if she can.  When she enters the room, I always announce, "Here's your hero!"   I've been making this declaration for years, but  this year the meaning of these words go many levels deeper.

     Karen did not flinch when she found out she would be the one to donate the kidney.  She would do anything to protect and care for her children.  I am so proud of her.  She is an amazing mother, wife, and friend.  I thank God I get to be her husband.

     Karen has a series of tests to go through over the next few weeks including an MRI and a CAT scan.  There will be several meetings, consults and a preliminary procedure for Sawyer that I will share more about later.

     It's been a while since I've written on this blog.  Typically, I don’t write when time is short.  Time has been limited, but that's not the reason for the lull.   I'm struggling with the decisions we are making and the challenges ahead so I've resisted posting to this blog in the last few weeks . 

     I don’t want Karen or Sawyer to suffer through the "big jump" ahead.  I want to do anything to prevent it, but this is the path God has for us now. 

     I think I relate more now to God, the Father, as He watched His son suffer and would not intervene because it had to happen.  It is the most miserable feeling in the world to stand by and watch someone you love suffer so much.  I hate it and certainly don’t enjoy writing about it.

     God continues to show Himself to us through so many people.  Our friends, family, and even people we do not know, continue to reach out to let us know they care and are praying.  God has used you to bring much comfort, strength, provision and encouragement.  Thank you!

     Now back to The Jump...

Start here.

     This is our family blog.  However,  since last August, DeBause.com has been more like Sawyer.com.  Sawyer is our 5 year old son who has an undiagnosed genetic syndrome that has affected his eyes, kidneys, and skeleton so far.

     On August 17, 2011, we took Sawyer into the emergency room suspecting his fever and pain were related to the minor surgery he had days before.  Unfortunately, we discovered that Sawyer's kidneys had failed.  Within hours, Sawyer was admitted into the intensive care unit where he received his first dialysis treatment.

     Since August, Sawyer has had a few ups and downs as he awaits a kidney transplant.  He receives  10 hours of dialysis each day, which is performed at home.  Most of this therapy takes place when he is sleeping.

     Toby and Karen DeBause are the parents of Will Carter, Emma, Ben and Sawyer DeBause.  Karen will be donating her kidney to Sawyer.  The surgery will take place on March 20th. 

 Other Links...

How you can help.

TransplantFactoids:  Get the specifics and a few fun facts about Sawyer and Karen's transplant surgery.