Arkansas Children’s Hospital Gets Lives back To Normal
Editors note: Following is the story of Jeffrey Michael Smith, the 16 year old son of Steve and Cheryl Ziegler and Joe Smith of Coal Hill, who was diagnosed with End Stage Renal Disease (kidney failure.) It is the final of a 6 part series about area residents experiences at Arkansas Children’s Hospital, which has ran leading up to the Charleston Music Fest that will be held at the Charleston Fairgrounds this Saturday, April 5th from 3pm to 11pm. Proceeds from the Music fest will benefit Arkansas Children’s Hospital. Food will be provided by Sacco’s Concession.
In April of 2010, Jeffrey Smith had a lot of bruising on his legs that he did not know where the bruising came from. His mom, Cheryl Ziegler’s initial thought was that Jeffrey was anemic since he had also had been very tired the previous week.
She scheduled an appointment with their pediatrician the next day and went in for some simple blood work. When they drew Jeffrey’s blood, Cheryl noticed it was a really dark red and very thick and that it took forever to fill the vile. The lab came back several minutes later and the family was informed that they needed more blood.
Of course Jeffrey protested, the first draw hurt and to that point, Jeffrey had been perfectly healthy, unaccustomed to needles, syringes, etc., Cheryl said. But they managed to get more blood. A short time later, Jeffrey’s nurse, Jessica, came into the room and told us Dr. McCraw needed to make some phone calls concerning Jeffrey but he would be back in with us as soon as he could, Cheryl said. “As she left the room, I noticed she was crying.” I could hear Dr. McCraw on the phone across the hall talking to Children’s Hospital and making arrangements for someone to get to their ER, Cheryl said. “From that point, our lives changed drastically.”
Dr. McCraw informed the family that Jeffrey was suffering from End Stage Renal Disease. I did not even know what that meant other than the fact that Jeffrey had little or no kidney function, Cheryl said. His blood pressure was 181/136. His BUN, a measurement of toxins in the bloodstream, was 119, normal is around 10.
They were rushed to Children’s and by midnight Jeffrey had undergone surgery to place a temporary hemodialysis catheter in his leg, received several blood transfusions, and started hemodialysis. They would later discover that Jeffrey’s kidneys never grew so as he went through puberty and began to grow himself, the kidneys could not keep up. A biopsy showed that most of both kidneys were so severely scarred they would never function properly.
Our stay in the hospital lasted three weeks, Cheryl said. In that time, Jeffrey had numerous operations and we learned how to care for him at home, she added. “The ACH staff became a part of our family. We knew every Neurologist, all of the dialysis staff, all the nurses on the 4th floor, most of the custodians, most of the cafeteria personnel, and met many families who cried, laughed, hugged, and prayed with us daily.”
Jeffrey worked especially hard during those three weeks, Cheryl said. “He learned to swallow pills, follow his very restricted diet, keep his fluid intake low, and take shots. He learned that certain needles worked better for him on his daily blood draws. He learned how to set up his home dialysis machine and break it down. He learned how to care for his exit site where his Tenckhoff was placed so that home dialysis could be done.”
He struggled most with his fluid intake, Cheryl said. Jeffrey was restricted to 40 ounces of fluid in a 24 hour period. That is not very much and he was thirsty all the time, she added. “I remember one night shortly after we returned from the hospital we were watching TV and a lawnmower advertisement came on. Jeffrey said, “Mom, I am so thirsty I could drink gasoline.” Needless to say, my heart broke!”
The family began the long path to recovery and maintenance. After a year of hard work on the part of Jeffrey’s nephrologist, Dr. Richard Blazack, his nurses, nutritionist, transplant specialist, and social worker, Debbie Brady, Jeffrey was well enough to be placed on the transplant list, Cheryl said. But, they waited another year for the call. When that call came early Sunday morning, November 11, I ran back to Jeffrey’s room to tell him the news, Cheyl said. Jeffrey just rolled over and said, “Mom, that is not funny.”
By the time they arrived at Children’s Hospital the news had spread. Our phones were blowing up with well wishes, Cheryl said. They discovered that another little boy, Connor, was getting the other kidney. The transplant for both kids went well and they were on their way to full recovery, she said. “We named Jeffrey’s new kidney Percy because Jeffrey had persevered over so much in his young life.”
They were scheduled to be released on the November 23rd. We would not be home for Thanksgiving but that did not matter, to the family. The staff at ACH made sure they had a happy Thanksgiving with them.
But on the morning of the November 21st, things took a sharp turn for the worse for Jeffrey. His blood work was a little off so Dr. Ellis, who was pinch hitting for Dr. Blazack while he visited his family for the holidays, sent Jeffrey to ultrasound to check the blood flow to the new kidney. While in ultrasound, Jeffrey started screaming in pain and the radiologist noticed a dark “fog” circling the kidney, Cheryl said. Jeffrey was bleeding internally and they quickly rushed Jeffrey to surgery. His transplant surgeon came in from his holiday to do the surgery. He worked diligently but was not able to save the kidney. He later told us that he had to make a decision, save Jeffrey’s leg or save the kidney, Cheryl said. “We were very grateful for his decision. Had we been home, Jeffrey may not have survived.”
When I finally got to go into ICU to see Jeffrey, I was in no way prepared for what I saw, Cheryl said. “Lines, wires, and tubes were everywhere. I had told Dr. Ellis earlier that when I got back to see him I would have my game face on but that quickly withered.” It was Jeffrey who amazed me once again with his ‘specialness,’ Cheryl said. “The first question he asked was, “Did I lose Percy?” His second question was, “Did I do something wrong?” After reassuring him that he did not and that this was a freak accident, his third question was, “Is Connor ok?” Jeffrey continues to worry about and check on Connor to this day.
Late that night, I was standing over Jeffrey in PICU, when I felt a hand on my shoulder, Cheryl said. It was Dr. Blazack who had received the news about Jeffrey while playing golf with some of his family members. He left his family’s Thanksgiving and drove nine hours back home to check on us, Cheryl said. “Wow! He stood by Jeffrey’s bed and wept. Don’t see that very often.”
Jeffery finally got to go home on December 20. That was the best Christmas present ever, Cheryl said. “My dad had moved all of Jeffrey’s dialysis supplies to storage when we got Percy and had moved them back in when we lost him. I believe that was very hard on him but I was so thankful he had done that for us.”
We were back in our old, normal routine of dialysis every night when we hit another bump in the road, Cheryl said. Jeffrey’s left leg had become numb and they headed back to Children’s Hospital to get it checked. The gortex sleeve that repaired the artery that burst when Jeffrey lost the kidney had developed a severe infection and would have to be repaired. That was another major surgery and another long stay at ACH.
There are two things that stick out so vividly in my mind about this roller coaster we have been riding the past 4 years, Cheryl said. “That first night at Children’s Hospital I held myself together pretty well until about 6:00 in the evening when my parents arrived with Jeffrey’s younger brother, Joseph. He ran up to hug me and the first thing out of his mouth was, “Mom, Jeffrey can have one of my kidneys.” “I totally lost it.”
Then the first night we returned home, my husband, Steve, was back in Jeffrey’s room talking to him, Cheryl said. “Steve told Jeffrey about how he had been recruited to play football for the Arkansas Razorbacks but broke his neck his senior year in high school and was told he could never play again. He told Jeffrey about how bitter and angry he was at first but how God had a plan for him and because of that career ending injury, he had become a coach. He asked Jeffrey to look for God’s plan in this illness.”
I cannot say enough about the staff at Arkansas Children’s Hospital, Cheryl said. “They have saved my son’s life three times but it is more than that. They take care of the whole family. We have never felt like just another patient there, not once.”
The dialysis unit hosted Jeffrey’s 16th birthday party because he was having hemodialysis that day, Cheryl said. “Jeffrey told us that there was no other place he would rather celebrate and no one else he would rather celebrate with. “
We are not sure what God’s plan for Jeffrey is, Cheryl said. “We take one day at a time. But we will not allow ESRD to define us.”
Since his illness, Jeffrey rejoined the swim team, got his lifeguard certification, and his driver’s license. He spoke to all civic clubs and organizations in Clarksville and helped pass a 1-cent sales tax to build the beautiful indoor competition and therapy pools and the water park. He has spoken at the Log a Load ACH fundraiser and has been interviewed by KARK TV where he talked about how awesome Arkansas Children’s Hospital is. He won the Perry Award at ACH’s kidney, diabetes, and arthritis camp last summer, served as parade marshal in his hometown this past Christmas and has been nominated to serve as an Ambassador for ACH.
With all the problems he has had Jeffrey has kept a positive attitude. He said he looks at his disease as an opportunity to help others. His career goal is to someday fly Angel 1 for Arkansas Children’s Hospital.