My Right Hand

 Today is Ben's 11th birthday! 

     The name Benjamin means "son of my right hand".  It's obvious that God knew Ben's name before time began because this is the perfect name for Ben. 

     Ben is my "go-to" guy, my "right hand" man.  Regardless of the project before me, Ben is always ready to help.  Ben will get up before dawn to start a job and not stop until the job is finished even if it continues well into the night.  He is the first one to volunteer to help others on a project.  Friends and family recruit Ben for help all of the time because they know he gets the job done!

     Ben loves God, he is a loyal friend, and has a great sense of humor.   Our greatest strength is often our greatest weakness.  So, Ben's humor often manifests itself in the form of teasing, which sends him to bed first on many nights.

     I love Ben and I'm so grateful he is my son… my right hand! Happy Birthday Ben!!

Round Two

     Last week, Sawyer finished round two of his IV therapy at CHKD to help fight his newest challenger,  the BK Virus.  Each therapy session lasts about 7 hours, but Sawyer tolerated it much better this time.

     The good news is that the first round of therapy landed a few punches on the virus.  The levels of the virus in his system are reducing.  It's not a knock out, but we are in this fight!

     The not-so-good news is that the virus has made its way into Sawyer's blood.  Although we were hoping it would not, our doctor was not surprised given the high level of the virus in his urine.

     Thanks for the continued prayer!   This puts you ringside for the knock out of BK in the near future.

    Round One

 

Sawyer's Wish

     A couple of months ago,  two volunteers from  the Make A Wish Foundation of VA, came by to interview Sawyer.  After asking him many questions about his favorite things, they ended their interview by asking him for his wish.  Sawyer responded,

"I want to have pizza with Mickey at Donald's house."

     Sawyer is getting his wish!  Make A Wish is sending Sawyer to Florida to have pizza with Mickey! They are also allowing the WHOLE family to tag along and spend a week at Make A Wish Village with passes to all of the Disney Parks, Sea World, and Universal Orlando Resort Park!!   This is an ALL expense paid trip by Make A Wish!!!

     Sawyer was giddy when he found out that his wish would be granted.  The two volunteers who interviewed him, David and Katie, recently came by to celebrate Sawyer and his wish.  They brought his favorite cake and snacks (Doritos and chocolate milk… of course!).

     It was the coolest party.  David and Katie shared all of the details regarding the upcoming trip, especially the reservation for a meal with Mickey. They also brought many gifts for Sawyer including toys and games for the plane trip and a Make A Wish t-shirt.  Sawyer slept in the t-shirt that night and it's been one of his favorites since that day. 

     We have been blown away by the thought of this incredible blessing.  It's such a big deal for our family that  I don’t think we will believe it is really happening until we get there.  Wow!

http://www.wish.org/

http://www.va.wish.org/

Round One

  
     Sawyer completed his first round of IV therapy today to knock down his newest challenger, the BK virus.  It was a long six (plus) hours, but he was able to sleep through a good portion because of a dose of Benadryl.  The Benadryl was a proactive measure to help prevent an allergic reaction to the Cidofovir and IVIG pumped into him.

Sawyer loves to save the orange fingers for last.

     Sawyer's doctor had some very encouraging news for us.  The virus has not yet entered into his blood.  They caught this virus so early that it is only in his urine and we pray it goes no further. 

     Also, his doctor was very reassuring regarding this treatment protocol.  Her protocol is much more aggressive in the treatment of BK virus than other nephrologists and she has experienced remarkable results.

        Sawyer's doctor believes this treatment will knock this virus down long enough for his immune system to take over in the coming months and keep it at bay.  Again, there is no cure, but his own body should be able to manage the virus on its own in the near future.

     Thanks for all the prayers today!  Keep'em coming!

This Has Nothing To Do With Burger King

     We found out today, through a routine urine test, that Sawyer has the BK virus. We have a lot to learn about this virus, as we just found out hours ago, but we know it can be very harmful to Sawyer's  new kidney if not treated quickly.  It appears we caught it early because they screen frequently for this virus and it was just discovered today.

     Sawyer will go through 6 hours of IV therapy in the hospital this week and again in the next two weeks. There is no cure, but the hope is to knock this virus down to the point it will not jeopardize  Sawyer's kidney.

     We appreciate your prayers regarding this virus.  Also, please pray concerning Sawyer's growth.  Sawyer should be growing with the new kidney, even a little "make up" growth.  However, this is not happening for him.  He is  below the 10th percentile in height. The doctor recently adjusted Sawyer's  steroid dosage and other tests will be performed soon. 

     Sawyer is bothered by his height especially as he sees all of his friends growing taller.   The other night he asked Karen if eating grapes would make him grow.  We hope so!

#17

     Seventeen years ago today, I became a "Gaabstopper"… I married Karen Ann Gaab.

     We met at a concert and nine months later we were married.  The first year was unbelievably difficult (mostly my fault), but we survived it and became stronger because of it.

     I fall more in love with Karen as each year goes by.  On our thirteenth anniversary I presented Karen with a list of 13 reasons why I love her and I've updated it every year since.  In year 14, I made this video for Karen...

     Here's the complete list with the newest addition… #17...

Reasons Why I Love Karen

(No Particular Order)

By Toby DeBause (Karen’s Husband)

1. She desires and seeks after God.
2. What you see is what you get. Genuine. No pretense.
3. Her integrity can never be disputed.
4. She is an incredible mother.
5. She has a great ear and loves to use it.
6. She snores only on occasion.
7. She never gives up.
8. I know she loves me
9. She knows great coffee.
10. I trust her completely
11. I’d be lost without her.
12. She never gets mad at me when I ask for help finding my keys.
13. She is my best friend.
14. She inspires me.
15. She is beautiful
16. She goes where He leads.
17. She gives all for the ones she loves.

Thanks for indulging me in my Public Declaration of Love (PDL).  But, good love requires a shoutout once in a while.

K., Still going there with you.  T.

Great Week!

For the last month, we have been concerned about several new issues regarding Sawyer's health.  One issue involves his liver and issue #2 has been more detailed than I care to explain right now. 

We got a GREAT report this week.  We found out that issue #2 was a combination of an infection and an adjustment needed in one of Sawyer's anti-rejection meds.   Infection is a scary thing in an immunosuppressed kid, but his body handled it well.  The infection has passed and he is doing well with the new dose of the med. 

We have an appointment with a liver specialist next week, but our doctor shared Sawyer's labs with the liver specialist in advance.  The specialist said he was not concerned by what he saw.  This  is AWESOME news!  There is still an issue, but it's good to know that there is not a huge train wreck around the corner.  A GREAT relief!

A good report is not the only great thing happening this week.  We have witnessed a significant change in  Sawyer this week as well.  He looks better and has more energy than he has had in a year.  His sense of humor is coming back as strong as ever too.  It is AWESOME to watch him acting like pre-kidney failure Sawyer.

Great week!  

Hero Mom

     Shortly after Karen and Sawyer came out of transplant surgery, I wrote the following letter to Karen while sitting bedside of Sawyer in the intensive care unit.  It was a difficult moment for me because I wanted to be with Karen too.  However, we made the decision in advance that I would be there for Sawyer when he woke up. 

    Since I could not be with Karen, I wrote down what I wanted to say to her if I were there when she woke up and sent it to her later.  I debated whether or not to post the letter because it is personal.  However,  I wanted to recognize my hero wife on  Mother's Day.  Besides, every husband should have a "Say Anything" moment for his wife every now and then.

3/20/2012

Hero wife,

Wow!  What a day this has been.  While you were sleeping we were holding on to the edges of our seats waiting for the next phone call or visit from the medical staff.  It was remarkable how God orchestrated this day.

One of the toughest parts for me was when they told us they removed your kidney. It sounded so offensive I wanted to intervene.  I became overwhelmed by the thought of your sacrifice.

When your kidney was in transit, we all welled up with great anticipation.  We were told that your kidney was “big and healthy”.  I assure you that you are only healthy.

Then the greatest of all the moments…we were told your kidney was just attached to Sawyer and urine immediately began to flow.  We all praised God for pee!

Oh my hero wife!  You amaze me!  The gift you’ve given.  The sacrifices you’ve made.

Sawyer is doing remarkably well.   The turnaround is miraculous.  Praise God for His great provision, mercy and healing.  Lord, thank you for my hero wife.

I am so proud of you and honored to be the husband of Karen.

Oh my hero wife!  I love, love, love you!!

T.

Flying High!

     Sawyer's labs and check up at CHKD went very well today. His new (44 year old) kidney is functioning very well!  As Karen's mom would say, "Karen is strong like bull!"  So,  no wimpy kidney for our boy.  He is blessed with a great high-performing kidney!

 

     Sawyer's other stats are looking good too.  His blood pressure has come down to normal levels since increasing his BP med dosage.   His liver stats (GGT level) continue to improve (Big Relief!) and  his anti-rejection drugs are starting to level out.

     The not so good news … Sawyer is in the 10th percentile for height and the 90th for weight, which means he is too short and obese.  The kidney failure is a big factor in his height.  Hopefully, he will begin to catch up now that he has kidney function.  Doritos and steroids have contributed to his weight gain.  It is a crazy cycle as the steroids make him incessantly "hungry" and crave the worst foods.  I'm hoping our insurance will cover the costs of the P-90X prescription.

    The great struggle continues to be the steroids.  We are grateful that this issue is not life threatening.  At least not for him.  He threatens ours occasionally, but we can hold him down and out run him because he's little and over weight (please, no emails.  I'm just joking … sort'a.)

     We have to laugh a little because  the steroids do make us all miserable.  Not only do they contribute to Sawyer's weight gain, they also continue to make him volatile and violent.  He is starting to limp again and there are a bunch of other side effects.  His doctor reduced his steroid dosage again today and she intends to continue reducing the dosage as aggressively as possible.  

     We are told that the first 6 months after transplant are critical and to expect a lot of "ups and downs".  We just passed week 7 since transplant surgery and we are experiencing a lot of "ups" . God's mercy and provision have been showered on us in abundance.  We are grateful!  

The Walk!

The DeBauses spent the day at the zoo Walking for LIFE! 

Some of the DeBause Boys and their friend Joshua
on a train at the Walk?!?!

We are not in Whoville.

Sawyer and his buddy Bailey

Not Too "Fweaky"

     The procedure to remove the stent from Sawyer's ureter was successful.  They scoped his bladder while they were in there and the doctor says everything looks good from the transplant surgery.

     Prayers were answered.  Sawyer was fearful going into it, but much less anxious than the day before.    He did not have any "scary dreams".  He hallucinated for a while after he woke up, but he tolerated it  well.  It was not too "fweaky".   

Of course , Sawyer refused the typical post-op fare of popsicles, slushies or juice.  He insisted on a Chick-Fil-A sandwich.  Easy request to fulfill. 

"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.

Turning A Corner!

    Last Friday, Sawyer had a complete abdominal ultrasound scan to determine if his bile duct was obstructed and to look around for any other explanation for his GGT level rising to toxic levels in his blood. No obstruction was found, which raised concerns about the source of the problem. 

     The good news is may never know the source because recent lab results show that the GGT level is  going down!  It has already dropped in half and continues to head south!!   This news is a big relief.  Our little guy has been through so much.  We praise God for His mercy. 

     This also means less itching for Sawyer as the toxins reduce.  Poor little guy  has been scratching incessantly for weeks.  In the last few days the itching has been easing up and I don’t think I saw him scratch one time today.

     We also learned today that Sawyer's anti-rejection meds are maintaining appropriate levels in his blood.  His doses were changing daily and now they are stabilizing.  With the GGT level dropping and the meds stabilizing, Sawyer will not have to have blood draws every other day.  More relief!!

     Karen continues to improve.  Her energy level is up and she rarely takes anything for pain.  Yesterday, her doctor told her to take it easy, but released her to start driving again.  On the way home from the doctor's office, she barely stopped the van to let me out so she could go shopping. 

     It is finally starting to feel like we are turning a corner in this healing process.  It's been a tough few weeks (and months), but God has given us what we needed when we needed it.  We are looking forward to a few uneventful days.  

Gamma-glutta-whatta?!?

     Sawyer continues to itch all over his body incessantly throughout the day.  There are some days that are worse than others.  His doctor has been treating this as an allergy issue since he had the anaphylactic reactions recently.  However, today she noticed something in his lab results that may better explain  the problem. 

     Sawyer's Gamma-glutamyl transferase (GGT) levels are increasing, which may indicate some blockage in his bile duct.   It could also indicate a liver issue, but Sawyer's liver was biopsied during his kidney transplant.  The biopsy report concluded that he has a healthy liver (PTL!).  Therefore, according to his doctor,  the most reasonable explanation is some type of blockage from the bile duct being pinched because  of the large adult kidney being squeezed into  Sawyer's small abdomen.  It's tight in there!

     If the bile is impeded, this would force the body to absorb more bile acids, which can cause the itching that is plaguing him and who knows what else.  Sawyer will have an extensive  ultrasound scan of his abdomen on Friday to help determine what is going on. 

     At this point, Karen and I don’t even want to ask the "what if" questions.  We will wait until Friday to deal with next steps.   Sawyer's doctor was quick to say, "Don’t worry!"  We'll take her advice and the direction of Jesus when he said, "Do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own".   I guess procrastination is not always a bad thing.

Give an inch and he'll take a…

scooter over a bike ramp!

     The doctor said Sawyer could run,  jump and play, but I'm not sure she understands just how far he'll go to test those limits.  So I'll keep the doctors release a secret from Sawyer for a little while longer.

Update:

     Karen continues to improve each day.  She is up to making full pots of coffee! Yeah!!   I am so grateful that she is in less pain, recovering well and keeping us caffeinated.  It's still been a few sleepless nights.

    Sawyer's new kidney is still functioning well. PTL!  The docs are still tweaking to his anti-rejections drugs.  I just got a call seconds ago to increase one of his anti-reject meds. Hopefully, this will stabilize soon.

     Sawyer's Roid Rage continues to ravage the peace and harmony of the DeBause home.   So, Sawyer had a consult with a CHKD psychiatrist today.  The consult went well. This doc is not too quick to prescribe more meds. We are grateful, but a few blow darts would help occasionally.  Seriously, the doc gave us some good tools to help manage the Roid Rage. We'll see how it goes. 

Steroids + Albuterol = !!!!!!!!!!!!!!

     Monday morning Sawyer was back in the clinic for routine labs and then he had to have a breathing treatment to replace one of the drugs that may have contributed to his allergic reaction.   It was quite a morning. 

     What happens when you give Sawyer prednisolone (steroids) and albuterol?  Well, you get a whole new level of Roid Rage.  I've watched Sawyer come unglued a lot, but this was something especially ugly. 

     He was calm and cooperative in the first 15 minutes of treatment, but the last 15 minutes was a battle royale.  He got so worked up that he eventually could not move his arms, legs, fingers or toes because of exhaustion.  It was  difficult to witness.  However, once he calmed down,  he started moving his extremities again after 5 minutes.

     We had to wait around for 2 hours to get the treatment, which added to Sawyer's angst.  However, one of the kidney clinic staff helped to get him out of the treatment center as soon as he was finished.  This was a big blessing.

Today's update:

     Sawyer's new kidney continues to perform like a champ. What else could we expect since he got the kidney from a champion?  The creatinine level in blood is a significant measurement for kidney function.  Sawyer's lab results today showed him at a beautiful level of .4!

     Sawyer continues to get his meds adjusted often.  Even if he did not have the allergic reactions, it takes a while to stabilize the meds, especially the anti-rejection drugs.

Karen improved today!  She almost made a pot of coffee!! 

     I can tell that Karen is getting stronger everyday and regaining some energy.  It's been slow.  Slower than we expected, but steady.  She has been going for short walks and spending some time sitting outside. 

     Karen is still wrestling with pain.  Her doctor gave her a new med today to help bring some comfort.  She has not had much more than ibuprofen for the last couple of days.  So, this will be a welcomed relief.

Narrow Escape

     Sawyer had another allergic reaction to his meds last night.  I pumped him with the max dose of Benadryl the moment I noticed him itching and developing a rash. 

     It was a narrow escape from the emergency room because he was miserable and stayed that way throughout the night.  However, his tongue and lips did not swell up like Thursday night's episode.  So, I held off going to the E.R., stayed up all night keeping him as comfortable as possible and  kept the Benadryl flowing.

     As much as I appreciate CHKD, I did not want to be admitted into the hospital again this week.  Of course, there was no way I would jeopardize Sawyer's welfare to avoid the hospital.  I kept in close contact with his doctor throughout the night.

      Fortunately, we think we found the med that is the culprit of the allergic reactions.  Unfortunately, it's one of his anti-rejection meds, Prograf.  So, Sawyer's doc just replaced this drug with another anti-rejection drug called Cyclosporine.  One of the side effects  is "increased hair growth on face/body". Maybe I should take a few doses.  Seriously, I hate to read about these meds.  Very scary stuff.

Back to CHKD

Update: 4:15pm... HOME!!!!  

   Sawyer suffered through a serious allergic reaction last night.  The docs believe one of his meds caused the episode.  We had to bring Sawyer to the emergency room last night at 9PM  and we were admitted into CHKD around 4:30M.

     He was MISERABLE last night, but doing well today.  Not sure when we will be discharged. 

Posted via phone.
 

Bit of a bummer, but grateful.

    This picture pretty much sums up Sawyer's day.  I had to whisk him from bed this morning to get his blood drawn at the clinic before his morning meds.  Even without steroids, blood draws always induce anxiety and anger in Sawyer. 

     Sawyer felt generally cruddy throughout the day .  Late in the afternoon, I had to take him to the emergency room because he  had not urinated for over 8 hours.   Not good for a newly transplanted kidney. 

     After a few tests were run (more blood), it was determined that Sawyer was not getting enough fluids.  I had been pushing water through his G-tube because I knew he needed to be fully hydrated to support the new kidney, but it was still not enough.  At least it is an easy fix .  I will be pushing more water and chasing him around with Slurpee's.

After I brought Sawyer home from the hospital, he complained of pain for the rest of the night.  He rarely, if ever, complains of pain.  So, we did our best to relieve him until he fell asleep.

     Sawyer was so traumatized from the day that when I kissed him on his head after he had been sleeping for 20 minutes, he woke up suddenly with a look of horror on his face, sat straight up, and said, "Please stop!  No more!"  Not the typical response to a good night kiss.

     Sawyer is laying next  to me now as I write this post.  He continues to twist, turn and cry out in his sleep.   Poor little guy.  Hate it for him!

     The more encouraging news is that Karen improved today.  I can tell she is getting a little more energy and strength.  She is experiencing some new pain near her incisions.   However, from what I am told,  this is typical as the nerve endings start to come back to life after being cut in surgery. 

    Overall, today was a bit of a bummer, but we are grateful, very grateful, that  there were no major issues regarding Sawyer's new kidney.   Huge relief!  Thank you God for your mercy.

Tranquilizer Gun

     I've been searching on eBay for the best priced tranquilizer gun to help protect us from Sawyer's steroid rage. Since, I'm on the web, I decided to re-post a video of Sawyer at CHKD when he was having one of his steroid fits.     

     BTW, we will only use the tranquilizer gun when he charges us. 

Caution... this video is intense.

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. 

T.M.I. Alert!

  Sawyer and Karen are still on the mend, but mending well.  Of course, Sawyer is far ahead of Karen in terms of recovery.  We have to help Karen get going while trying to slow Sawyer down.

 

Sawyer playing outside today with his buddy, Chase.

   T.M.I. Alert!  Sawyer stood up to pee today.  First time in 7 months!  Suddenly for a few brief seconds,  the entire universe seemed properly aligned.

     Sawyer heads back to CHKD tomorrow to get his new kidney checked out.  I think we have to go back twice a week for a while.  We will gladly deal with this inconvenience to ensure his new kidney stays healthy.  We appreciate your continued prayer. 

Home!!!

Tired and exhuasted, but Sawyer and Karen are home!!  More of an update tomorrow.     

180

Today

was a

remarkable

day!

    

 

      Karen did a 180 from yesterday to today.  She weaned off of the IV pain pump, started eating real food, gained back a lot of strength, walked around her ward several times, the nausea dissipated… she looks and sounds great.  

     Sawyer is now completely untethered from monitors , catheters, and IV's.  All of his labs continue to look great.  His doctor said he is doing "better than expected". 

     We all came here together on Tuesday.  It appears we will all go home together tomorrow.  How cool is that?!?   I think a few people are praying [understated].

     Here is a video of Sawyer as he started walking today.

Popsicles and Potatoes

     Sorry for the sporadic updates.  I'm finding it almost impossible to blog, check email, facebook, etc.   Our hands are full!

     Sawyer left the intensive care unit yesterday afternoon.  Soon after getting into his new room, HeroMom paid Sawyer a visit.  Karen was not physically up to the visit, but that was not going to stop her.  It was awesome to see them connect for the first time. I'd show the picture, but HeroMom would put me in the hospital with her. 

     Karen is better today, but she is not ready to go home.  I was grateful to spend some extended time with her this morning.  She is finally eating some jello and popsicles! 

     Sawyer continues to progress very well.  Today we are focused on getting him to walk again.   

     Sawyer's is LOVING french fries after a 7 month potato hiatus.  He orders french fries with every meal. Usually he leaves the entree and just eats the fries.

Catching up

     You may be wondering what happened to the rest of my day two post.  Well, let's just say it was an adventurous day of many highs and a few lows. 

     Karen is still in a lot of pain and not eating.  Her pain is controlled with a pain pump and Tylenol cocktail, but this keeps her sleepy.  Hopefully, she will start eating some today and moving around.  Moving is very important in this healing process.

     Sawyer is still excelling in his recovery. All systems are a go!  I mean... reeeeally going!

     Most people start off with a little chicken broth after surgery.  Sawyer had Doritos for his first meal.

     Sawyer's favorite thing that he has had to give up over the last several months is chocolate milk.  He drinks them so fast I can't get a picture, but here is one picture with another top request... chocolate ice cream!

It's not Cold Stone, but it will work.

     The highlight of yesterday was a visit from the brothers and sister.