Sawyer and Sooner

Sawyer and Sooner

     During Sawyer's stay at CHKD, he loved to get visits from the dogs in the Buddy Brigade  Each dog even had their own personalized trading card, which Sawyer loved to collect.

Today's Update:

     Sawyer's blood pressure still remains too high.  The new meds have not yet "kicked in". The doctor's are well aware and following us closely.  We are grateful for their care and competence. We continue to pray his BP drops soon.  Thank you for praying with us!

Taming the BP

     Taming Sawyer's blood pressure is a battle royal.   We had to go back to CHKD today because his blood pressure (BP) continues to be way too high.  They ran more blood tests and have adjusted his prescriptions again.  

     We hope this new regimen of meds wrestles Sawyer's BP into a normal range or at least close to normal.  Sawyer's doctor continues the mantra, "Nothing is typical with Sawyer!" 

     We did get some good news from the blood tests.  His liver enzymes have reduced  to almost normal levels.  This is a big relief.  The doctor now feels confident that the levels were elevated because of another BP medication that we stopped using days ago.

     On another positive note, Sawyer has been laughing today.  He has not done that in a while.  If you know Sawyer, he is typically full of laughter. However, he has only given us a few smiles on occasion until today.  It's great to see glimpses of my boy and looking forward to the day he is with us fulltime.

Candid

    Sawyer's blood pressure (BP) continues to be an issue.  His doctor is concerned and working very hard to help stabilize him.  Today they added another BP medication and we are making more adjustments to his dialysis tonight and tomorrow. 

     All of this is taking it's toll on Sawyer.  He is very bloated, depressed, and feels horrible.   Some of this stems from the steroids.  However, the hypertension must get controlled or something worse could happen.

     We are not panicked and do not live in a spirit of fear.  I am being candid so that you will know how to pray.

     We are leaning way into God and our confidence rests in Him.  He has made great provision for Sawyer through the CHKD Kidney Team.  These are remarkably competent and caring people.  We are truly blessed to be in their care and anticipate better days ahead soon.

     This battle is vicious and non-stop.  Thank you for your continued prayer.  We are blown away by the reports of how many people are praying for our boy.  I don’t have the words to express how grateful we are for your care, concern and support.

Struck Out.

Sawyer made it to the Tides last baseball game today.  However, we could only stay about 40 minutes.  Soon after we arrived, his blood pressure (BP) elevated to a dangerously high level.

     We gave him his emergency BP med and started out to the emergency room.   The BP med kicked in quickly, reducing his BP and we were able to connect with our doctor.  So we opted out of the trip to the hospital, but his BP  was still too high to risk staying at the game.  Plus, Sawyer was wiped out after that episode.

     The good news is the Tides  hit 4 home runs in the one inning  we were able to watch.  Very cool! 

     It was a short trip, but Sawyer came alive with anticipation before the game and he was grateful for the time he had there. 

     At this point, Sawyer is not stable enough for much activity.  This will most likely delay his start of preschool and soccer this week.  However, we will keep working hard towards his recovery and take it one day at a time.  We are trusting God for wisdom and discernment as we go. 

     Thanks for cheering for my boy today.

Play Ball!!

Too High.

     Kidneys are amazing organs. They do a lot of things and helping to control blood pressure is one of them. So, it makes sense that kidney failure causes high blood pressure.

     High blood pressure is an ongoing battle for Sawyer.  It's always too high.

     Yesterday, Sawyer's blood pressure was way too high.  We had to cancel our plans to take him to church.  We monitored him hourly and stayed in touch with our PD nurse throughout the day (incredible lady!).    Sawyer is on several blood pressure meds and yesterday we had to give him an additional med to bring it down ASAP.

 

     As of this morning, Sawyer's blood pressure is lower than yesterday, but still above his normal high.  He has been asking to go to a baseball game all summer and really petitioned us for a game while in the hospital.  We have tickets to today's Tides game.  We are hoping he can make it.  It's an early game.  So, he will be able to return home in time for dialysis. 

 

     Batter up!

Sawyer on steroids… uh,oh.

     Part of the treatment for the Sawyer's kidneys is a twice a day dose of steroids.  Sawyer without steroids is a force  to be reckoned with.  On steroids… well, it's been a bad scene.

 "Mr. McGee, don't make me angry.  You wouldn't like me when I'm angry."

     Sawyer has not been the same since starting his steroid regiment. He is extremely irritable and easily agitated.  He has frequent outbursts of anger and rage.  He gets violent.  He tells everyone that he "hates" them including God.  He screams,  swings, kicks, punches, pulls hair (an exercise in futility when he tries grabbing mine) and he bites.  I found out about his biting the hard way.

     Sawyer asks for something to eat and drink every 5 to 10 minutes.  Literally, every 5 to 10 minutes. Last night, he woke up every hour shouting for food and drink.  This is also a side effect of the steroids.

     You could not make one meal out of what the old Sawyer would eat in a day.  Now, he eats and drinks  as much as he can get.  Unfortunately, he is very limited as to what he can eat and how much he can drink.  His doctor is only allowing 30 ounces of fluid per day, which includes his medicines and he is on a strict renal diet. 

     The doctor says the renal diet is the toughest out there.  Low sodium, low potassium, and low phosphorus foods only.  Who ever considers phosphorus?!?  Some food manufacturers neglect putting phosphorus on the label.  So, we have to double check all foods online, or where ever we can find the info, to determine the  amount of phosphorous.

     Caring for Sawyer's health is already a challenge.  Fighting him every step of the way makes for a greater challenge.  Yet, we know he does not want to act like this.  He says so in rare moments of clarity.

     The steroids are exploiting  Sawyer's fears and frustrations.  We continue to pray asking God to calm his heart, mind and soul.  Karen and I understand we are part of God's provision for Sawyer to soothe him.  It's hard to remain patient when his teeth are dug into you, but we are working hard to keep our game faces on and love him through this passing storm.

Clinic Follow Up

Today we went back to CHKD for a follow up visit in the Kidney Clinic. Sawyer was very anxious when we first arrived. Who could blame him? The last time he paid a visit, they kept and tortured him (in his mind) for two weeks. I have to admit it was unsettling and surreal for Karen and me too.

Sawyer's stats from his blood tests were not good.  The dialysis is not removing enough waste from his blood.  So, we are having to increase the intensity of his dialysis, which also means we must continue 14 hours of dialysis daily.  We were hoping to reduce it to 12 hours per day.

 
The blood tests also revealed an abnormality regarding his liver enzymes. The doctor said it may just be some of the medicines he is using. So, we added a few more prescriptions today and dropped one.

Sorry for the late updates over the last two days.  Hopefully, things will settle down soon.

G'nite.

Wii-lly Fun Time While On Dialysis!

Big brother Ben and Sawyer on the Wii 

Little Rocks

     Last night's dialysis started with a few twists and turns, but overall it was a successful treatment.  We just started the next session of dialysis at 5PM and it will last until 7AM. 

    Being stuck in bed at home for dialysis has proven to be more of a challenge for Sawyer than it was in the hospital.  Even in his weakened state, he loves his freedom and adventure. The temptation is greater at home.  He takes every opportunity he can get to go outside and throw the football with me.  I love every minute of it.

      We have moved all of the fun activity to Sawyer's bedside during dialysis.  It's an adventure all in itself to pile up the entire family into one bedroom.

     Sawyer's blood pressure is still too high and his belly has remained distended.  The pressure in his belly from the distension causes complications with the dialysis, but not enough so far to warrant another trip to the hospital.  We return to the kidney clinic in the morning for follow up and more tests.

     A friend sent this verse to me this morning:

          He opened the rock and water flowed out;

          It ran in the dry places like a river.  

          Psalm 105:41

     Thank you for your continued prayers for Sawyer's healing.  It is no big feat for my God to literally bring Sawyer's  kidneys  back to life.  If He can speak the world into existence, He can, with less than a whisper, open those little rocks and pour out a river.