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.

Transplant Day 2

4:30AM Yes, it's 4:30AM and Sawyer is playing with his new power ranger toys and watching TV!  He says he has no pain.  He wants to eat (he can't) 

Sawyer can not sit up all of the way and only has one arm available, but he's not letting that slow him down.

I'm exhausted, but so praising God right now. No way would I trade this moment for sleep.

3:40AM: Sawyer is doing unbelievably well.  He just woke up and requested to watch TV and open the presents we brought to him.  See him pictured above with his new Power Ranger Samurai sword. 

3:30AM: I was blessed to stay with Karen until she was ready to sleep again.

2:00AM: Went to check on my hero wife Karen. Karen is in great pain and nauseated.  I requested stronger doses of pain medication.  The nurse said "yes" and gave Karen nausea med too.  The nurse said she was using a medication stronger than morphine.  Try convinincing Karen. 


1:30AM: I am in awe of the turnaround in Sawyer's stats. His new kidney is working GREAT!!!! So grateful to get good news every time a test comes back.

Last night at this time I was so miserable I could not sleep. Tonight I am so elated I can not sleep.

Transplant Day: A New Chapter Begins.

     Today is transplant day.  A new chapter begins in this unfolding story about a boy with broken kidneys and his hero mom.  

I will be posting updates within this post all day long.  So check back often.

1:30AM  I am in awe of the turnaround in Sawyer's stats.  His new kidney is working GREAT!!!!  So grateful to get good news every time a test comes back. 

     Last night at this time I was so miserable I could not sleep.  Tonight I am so elated I can not sleep.  

10:00 Karen is still in a lot of pain.  Unfortunately, it's unavoidable with this major surgery.  She is so strong.  She amazes me.

     Sawyer is resting well with his pain meds.  When he stirs, he is miserable, but he does not stir too often.

     Today was a big day [understated].  Too much to put into words.  However, I will say this, God gave us great mercy.  I will say much more later, but I can't help but praise Him for His great provision, mercy and goodness.

     I am so grateful for all of the emails, texts, facebook posts,phone calls, voice mail, blog comments, and visitors.  I wish I could have responded to all of you today, but please know we were comforted greatly by your encouraging words, gifts, help, and prayers. Thank you!!  It was more than obvious so many were praying.

5:30 Sawyer is in the intensive care unit.  He is still sleeping, peeing like a champ and his creatinine level has already dropped 50%! The creatinine level is a major indicator of kidney function.  The lower the better for Sawyer.

     Although he looks pretty bad right now, all of Sawyer's stats are where they need to be.  

     Karen is stable, resting, but in a lot of pain. 

     We have much to be thankful for.

3:00PM Karen is still in recovery, but she is doing well.  She is in a lot of pain as expected.

2:15PM:  The transplanted ureter has been attached to Sawyer's bladder.  Just spoke to the doctor.  He said, "all could not have gone better".  Sawyer is being closed up right now.   So grateful for God's provision today. 

1:10PM:  Kidney has been transplanted.  Urine is flowing!  Praise God for pee!!

1:00PM: Karen is out of surgery and doing well!

12:15PM:  Kidney delivered! It's a "big, healthy kidney".

12:05PM: Karen's kidney has just been extracted and the transplant team is carrying it from Norfolk General to CHKD right now. WOW!

11:30AM: Sawyer's PD Catheter has been removed.  This has literally been his lifeline since August.

10:10AM: Karen is doing well in surgery.  They anticipate extracting her kidney at 11:30AM.

9:35AM: Sawyer just went back to the operating room.  The transplant surgeon led us in prayer before Sawyer left us.

Waiting

7:40 AM: Karen just went back to the operating room.

5:35 AM: Sawyer is checking into the Children's Hospital of the King's Daughters (CHKD)  

5:30 AM: Karen is checking into Sentara Norfolk General.

a little bit more than miserable...

   Tomorrow is the big day.  We had to start Sawyer's dialysis extra early so he would get his full ten hours of treatment.  He made a point of reminding me that this was his last night of dialysis.  As much as he hates the hospital, he is excited about the end of dialysis and getting rid of the PD catheter that has been surgically attached to his body for 7 months.

     Karen is at peace tonight and is as ready as she will ever be for tomorrow.  She is my strong, hero-wife.

     I confess that I am a little bit more than miserable tonight thinking about what Karen and Sawyer are going  to go through tomorrow. I'd do absolutely anything, short of dishonoring my God,  to take this burden from them and this life long fight away from Sawyer.  I hate it.

     The hardest part of this trial is not trusting God and His plan, it's watching your loved ones suffer.  I read a quote this morning that was attributed to  CS Lewis.  It said,  "We are not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."

   So, as I go to bed tonight, I'll do what I've done every night since August 17th , (the day we learned of Sawyer's kidney failure) I'm going to beg and plead with God to intervene and heal my boy.

    I will be posting updates tomorrow as fast as I get them.  Thank you for your prayers and for caring so much for our family.

Still on!

     We heard back from the transplant team and all is well.  They are not concerned with the beta strep in Karen's urine.  Karen is receiving antibiotics and they expect no complication from the strep.

     The transplant is still on for tomorrow!   First day of spring… NEW LIFE!!!

Roller Coaster Day

     This has been a roller coaster day.  It started low, went extremely high, and it's ending low again.

     We spent the morning at the children's hospital concerned that Sawyer may have peritonitis.  Peritonitis is bad any day, but today it would postpone the transplant.  We thank God that Sawyer's test was negative.  No peritonitis.

     Later in the day, many friends gathered with us to pray for Sawyer and Karen.  It was not only a high point of the day, but of our lives. 

     To have so many friends surround us with powerful, sensitive, compassionate, empathetic and heartfelt prayers... well, there are no words to adequately describe my thoughts and feelings right now.  Anything I would say would fall short of communicating how deeply we were touched and impacted.  God revealed Himself to us in a very special way through these people and their prayers. I'll never forget that moment.

     Unfortunately we are ending this day with some bad news.  The urologist, who will be extracting Karen's kidney on Tuesday, called this evening to report that he found beta strep in Karen's urine.  Beta strep is a Group B strep bacterium.  It is not the same thing as strep throat, which is Group A.  The urologist is not certain if this discovery will post pone the transplant.  He is consulting with the transplant surgeon. 

     We should know more tomorrow.  The urologist gave Karen a prescription for an antibiotic to begin immediate treatment. 

     Obviously, anticipation and tension are mounting as we draw closer to transplant day. Postponing the surgery would bring all sorts of challenges.  However, we do not want to get a head of God.  So, regardless of our feelings, we trust Him for the path we are on.   

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

Prayer gathering for Sawyer and Karen this Sunday!

     Before the Big Event on Tuesday, it would be great to spend time in prayer with friends, family and even people we've never met who care.


     Please join us for a prayer gathering for Sawyer and Karen this Sunday 2:00PM at Community Church of Chesapeake. 


Community Church of Chesapeake

253 St. Lukes Church Rd.

Chesapeake, VA 23320

Click HERE for directions.

How you can help.

     The most asked question regarding Sawyer is "How can we help?"  God has poured out His love on the DeBause's  through family, friends, and many people we have never met.   Although, it's humbling to be in this position, we are blown away by the generosity of so many. 

Prayer

     We cherish every prayer for Sawyer and our family.  There is a prayer group that has formed on Facebook called "Praying for Sawyer". 

http://www.facebook.com/groups/219015938153212/

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.   

Most important...ever

A while back, Ben made the most important commitment he will ever make in his life.  Yesterday, he shared it publicly. 

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…