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.