"I'm afraid I won't wake up."

     Tomorrow Sawyer heads back to CHKD to have to stent removed from his new ureter. 

Transplant factoid #5: The donor's ureter goes with the kidney during transplant.

     This stent runs from the kidney through the transplanted ureter to the bladder.   It helps to prevent post-surgical inflammation from restricting or blocking urine flow, which would be unspeakably horrible after a transplant.

     This procedure will not require any incisions. However, Sawyer will be put to sleep. 

     We just told Sawyer about the procedure a few minutes ago.  Although we assured him of no more "cuts",  he was very disappointed.  He was calm, but alligator tears started rolling down his cheeks.

     I asked him what was scaring him.  He said, "I'm afraid I won’t wake up".   Later he said, "I don’t want to have two mouths again".  It is not unusual for him to hallucinate a bit and have weird dreams as he tries to shake off the anesthesia post surgery.

     Although it's a simple procedure, he does not understand that very well.  Who could blame him?  It has not been simple since August.  He's a very smart 5 year old and thinks about all of this stuff.  So, he is anxious.

     Please, if you are praying,  ask God to give Sawyer peace regarding this procedure.  The "formula" for peace is to ask for God's help with what is bothering you and spend the rest of the day thanking Him for the blessings you have already been given.  My take on Philippians 4:6-7.  So today, we will practice this with Sawyer.  Thank you for praying with us.

Necessary Evil

     Steroids.  They are the necessary evil in our life right now.  Necessary because steroids help prevent Sawyer's body from rejecting his new kidney and evil because steroids cause Sawyer to have unbelievable episodes of anger and rage. 

     Sawyer begs for food every five to ten minutes (literally).  He screams, says very hateful and insulting things, bites, punches, kicks and snaps without warning.  For his own safety and the welfare of those around him, there are moments when he has to be restrained until he calms down.  I hate those moments.

     I was looking back at a post I made on this blog the last time Sawyer started taking steroids, which was shortly after we found out his kidney's shut down.  He is expressing himself the same way now that he did then.   You can read that post by clicking here.

     This is a difficult time right now as we navigate through Sawyer and Karen's recovery.  Adding  steroid induced rage to the mix makes it feel almost impossible.  It's not impossible and God is giving us what we need to get through this, but it is a battle royale.

     Other than the steroid issue, Karen and Sawyer are progressing. Yesterday was horrible for Karen in the morning, better in the afternoon and horrible again last night.  I'll spare you the details of what horrible means.  Today though, she is doing much better.   Karen is a strong hero-mom.

     Sawyer had to go back to CHKD yesterday for blood tests and an examination.  We go for more blood testing tomorrow and we will be back in the clinic again on Friday.  Sawyer's doctor is keeping a close eye on him and his new kidney. We are so grateful for the diligence and expertise of his medical team. 

Transplant Factoid #4

Transplant Factoid #4 

After Tuesday, Sawyer will have three kidneys. 

     The recipient's kidneys are not removed during transplant surgery. They remain and eventually shrivel up. Sawyer's kidney's have already started to atrophy. Karen's kidney will be placed just below Sawyer's kidneys.  As Sawyer would say, "Fweaky".


See other Transplant Factoids

Transplant Factoid #3

Transplant Factoid #3

The donor (Karen) and recipient (Sawyer) surgeries last approximately 5 to 6 hours each. 

     The surgeries are well timed between physicians so that Karen's kidney will be ready for extraction as soon as Sawyer has been surgically prepared to receive it. Karen will be at Norfolk General and Sawyer will be next door at CHKD.   

Bust'a Move!

Over the last few weeks, Sawyer's blood pressure has been high, which causes headaches and makes him feel lousy.  Regardless of the BP, you can't keep a good (little) man down…

Green Light!

     

     On Monday, Karen was given the "green light" by the nephrologist  to be Sawyer's kidney donor.  Woo-Hoo!! 

     It's been a longer road than we anticipated to get to this point, but we are grateful Karen is healthy and able  to be the donor.

The surgery date is set for March 20th.

      Reality is setting in!  It's hard to wrap our minds around what is getting ready to happen.  It's truly sobering.  However, we are ready. 

     Sawyer has already started making a list of all of the things he wants to eat  that have been prohibited by his renal diet over the last few months.  Chocolate milk tops the list!

Fweaky, but...

     The other night, as I was hooking up Sawyer to his dialysis machine, he declared, "I like my g-tube." I was a bit stunned.  Then he said, "It's fweaky, but I like it.  I don’t taste the meh-i-sin no more."

     Wow.  As I continue to loathe the little foreign object rooted into my son's belly, he is adjusting to it very well.  Tough little guy!

Update:

     Sawyer has still not bounced back from his last surgery.  He is not feeling well , especially in the morning and evening.   He throws up almost every morning and his blood pressure has been consistently too high.  The high blood pressure is causing headaches and dizzy spells.

     As always, Sawyer is getting great care. Adjustments are been made daily to his dialysis.   Hopefully, he will level out soon.

     We are still waiting for the urologist to review Karen's CT Scan and clear her for the transplant.  initial reports are good and we anticipate getting the green light from this doctor. 

     After this, there will be at least one other blood test and a few more meetings.  We are on track for transplantation in mid to late March.

Back on Track!

   Good news!  All three of Karen's re-tests came back with good results this time.  Therefore, Karen is back on track to complete the rest of her testing to be Sawyer's kidney donor. 

   We thank God that there are no health issues for Karen and that she can continue the donor process. Next test for Karen… CAT Scan.

Sawyer Update:

Sawyer was slow bouncing back from last week's surgery.  We debated taking him to the E.R. over the weekend, but decided to wait.  On Monday he showed a big improvement and he continues to improve today.  Thank you for praying.

Going home soon!



TV Therapy

     Sawyer will be going home within the hour.  He woke up sick, but this was attributed to his medicines.  His potassium level has reduced enough that his doctor's are comfortable with him leaving.

     Sawyer slept very well last night and his pain meds continue to keep him relieved.   Freeeeedooooom!

"Can't help but recognize…"

  

     Sawyer's new pain med helped a lot tonight.  He is very tired, but much relieved.  We are hoping that dialysis reduces his potassium level so we can go home tomorrow.

     Although today has been challenging, we can’t help but recognize so many blessings and answered prayers. 

     Last night we asked everyone to pray for peace in Sawyer's heart.  He was disappointed and concerned about the news of another surgery , but he enjoyed his bedside ice cream party and was calm on the way to the hospital this morning.  He even kept his composure in pre-op.  He never stays cool in pre-op.  Typically, they have to sedate him right away, but not today.

   When Sawyer first discovered the G-Tube on his belly, he had tears of sadness, but not frustration.   Typically, he is letting everyone in the hospital know how frustrated he is, but not today.  It broke my heart to witness his pain and disappointment, but I was grateful for the peace and strength I saw in him. Grateful for God's presence in the heart and mind of my boy.

     We were blessed again today with top notch medical staff...

The skillful surgeon.

The post-Op nurse who cared so much that she visited  Sawyer hours later.

The charge nurse who moved us into a private room.

Our renal doctor who is always amazing.  She was there to greet and care for Sawyer moments after getting into his room.   She intervened immediately after learning that the pain meds were being held up by some bureaucracy.

Kidney clinic staff who went out of there way to pay Sawyer a visit today.

Our PD nurse who is nothing short of Superwoman!  She is one of Sawyer's greatest care givers and advocates.  Today was another remarkable day of being in her care.  We are blown away by the steps she takes to care for Sawyer and comfort him too.

Our genetics doctor, who is not feeling so well herself, stayed later today to care for Sawyer and steer us in the right direction.

     We are blessed with incredibly caring friends and family.  Thank you for all of the offers to help, the texts, email, calls, FB comments and prayers!  God comforts and strengthens us through so many people.

Going up.

     Sawyer's potassium level continues to rise.  So, no rest for his belly, he must start dialysis now.  


     The PD Nurse just started his 16 hour therapy.  This dialysis session has to run longer than his typical 10 hours. They are cautiously using a lower volume of solution since his peritoneal cavity was penetrated during surgery today.


     Sawyer is very quiet and continues to have a lot of pain.  Of course, he just had a piece of plastic poked completely through his abdomen and attached through his stomach.  Tough kid! #gratefulforpainmeds

Sawyer Post-Op Update

     Sawyer has left the post-op area and is in a room.   He's in a lot of pain and waking up slowly.  The nurses are on top of his pain meds.

     Sawyer's potassium level is too high.  His doctor is monitoring  him closely.  No need  for alarm at this point, but it needs to come down. 

     Typically, dialysis will help this, but the doctor was hoping to skip dialysis for one day to give Sawyer's belly an opportunity to heal and rest.  If the potassium level does not come down soon, they will have to start dialysis (low volume) immediately.  

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...

More Good News

     More good news!  Sawyer had his hearing tested today and his audiologist says it is "perfect". 

     Some kids with genetic issues like Sawyer have hearing problems and many other issues.  Sawyer's doctor has been ruling out other problem areas.  For today, we can check this one off the list. WooHoo! 

     We are grateful for God's mercy and provision for our boy!

Welcomed Relief!

'

     Great news today!  Sawyer went to an orthopedic specialist to get a consult regarding his skeletal dysplasia.  The doctor confirmed the dysplasia.  However, it is not severe and he does not see it limiting Sawyer too much in the future.  He even predicted Sawyer could get as tall as 5'7" to 5'10".

     Our most immediate concern was Sawyer's hips. We have not noticed him limping lately.  However, he has not been very active now that soccer season is over.  The doctor was not troubled by what he saw in the x-ray or as he observed him walking. 

     This specialist will follow up in the next few months, but he was encouraging today.  This is a welcomed relief! Karen and I praise God, the One who knit our boy together.

     Sawyer has continued to do well with his dialysis.  Fewer alarms go off in the night and he has a good routine.  He still fights us regarding every medicine he has to ingest, but I'm glad he is a fighter.

     He has not been feeling very well the last few days.  It is not unusual for him to vomit in the mornings.  We thought it was some of his meds making him nauseas.  However, he has been sick without any meds recently.  Not sure what is going on there.  The doctor is aware.

     I have more to share, but no time to type.  Thank you for your continued prayers.  Although I have not been able to update this blog much in recent weeks, many people continue to reach out and let us know they are praying steadfastly.  Very encouraging!!  Karen and I continue to boldly ask God to heal Sawyer and we are heartened to know others do too.

It Will Happen

     In my last post, I shared that our health insurance company refused to cover Sawyer's genetic testing.  I did not realize until after so many people responded to this post that, in my attempt to communicate disappointment and frustration with our health insurance company, I actually sounded rather hopeless. 

     Karen and I are far from hopeless.  We have full confidence, along with our doctor, Sawyer will get these tests one way or the other.  It may not happen right away, but it will happen.

     Thank you to those who offered to help and intervene on our behalf.  At this point, we are following the lead of our doctor.  She is a force to be reckoned with all by herself.  However, we will not hesitate to ask for help when the time is right. 

     It is very encouraging and reassuring to know that so many people care so much.  Our family has a lot to be grateful for.  Thank you for praying, caring, and fighting this battle with us!