Taylor's Miracle ~ Part Three

The honor of being chosen the recipient of the coveted Kiwanis Merit Award medal during the eighth grade graduation awards ceremony was just the boost Taylor and our family needed.  The worst of the medical trauma appeared over and recovery was on the horizon.   Taylor still had two days of school to finish the following Monday and Tuesday, but after that, he planned to use the summer to finish his four to six weeks of antibiotic IV infusions at home to erradicate the staph infection and rehabilitate his knee and body for the upcoming high school football season.

Anxious to reconnect with his teenager social life, Taylor attended a youth baseball game on Saturday afternoon, June 3rd, 2006, to watch his teammates play.  It was a very warm, sunny day.  Dressed in a t-shirt and shorts, he applied sunscreen everywhere except his affected knee and leg due to the recent surgical incisions that were still healing.  His stiffened knee meant he had to prop his leg on a bleacher and, of course, it was the only area that became sunburned that day.  Even though his leg was no longer swollen or painful, the red sunburned leg was difficult to look at.   It reminded us of the frightening appearance of his recent staph infection ordeal.   But he kept assuring us his leg did not hurt.

The next day, Sunday, I found it odd when Taylor began complaining of a sore throat of all things.  Still on IV antibiotic infusions every eight hours, I wondered how on earth could he catch a sore throat with such powerful drugs in his system?  The oddness turned to uneasiness when I noticed during Taylor's routine blood pressure and temperature checks that day that Taylor's temperature was starting to slowly rise.

By 4:30 Monday morning, June 5th, 2006, his fever had reached 102 degrees.  It was a degree over the 101 degree warning benchmark the doctors had given us to alert them by phone call.  As soon as the doctor’s office opened that morning, I called and we were in the infectious disease doctor’s office by 11:00 am.

The doctor became extremely alarmed at the severe redness and warmth of the leg.  Taylor assured him it was sunburned, not swollen, and he was feeling no pain other than a sore throat and fever.  The rising fever, however, troubled the doctor.  The antibiotics Taylor was still receiving by IV infusions at home should be combating any other infectious source.  The infectious disease doctor discussed the possibility of extending the six week antibiotic infusions to perhaps months of drug therapy into the future.  To be safe, the doctor immediately issued re-admission orders to the hospital for observation and a MRI screen of his knee and leg to evaluate the staph infection.

Hours later, after Taylor's hospital re-admission, the MRI screen was conducted and the results were reviewed by the infectious disease doctor as well as Taylor’s orthopedic surgeon. It showed no signs for concern. It was welcomed news that the staph infection appeared under control with the continued IV antibiotics every eight hours. However, the doctors were still concerned as to why Taylor’s fevers had returned and were now reaching 103 degrees.

Taylor’s condition continued to worsen throughout the day. His fevers remained high and he was no longer eating or drinking once again. Due to the previous nine day hospital stay, his healthy 135 pound weight had now sunk to 123 pounds as we faced yet another over-night hospital stay.

The next day, Tuesday, I began to notice that Taylor’s symptoms worsened each time he received an antibiotic infusion. His body would shake uncontrollably and his teeth would chatter for nearly an hour then he would get sick and vomit. His fever would break with Tylenol or Motrin and he would be wringing wet with sweat from head to toe. You could see the outline of his body on the bed sheets requiring several hospital gown and sheet changes throughout the day as the cycle repeated itself with every 8 hour infusion.

After discussing my observation with the doctor, he agreed to stop all antibiotics for a 24 hour observation. During that time, the body shakes, teeth chattering and vomiting stopped, but the high fevers continued. Taylor also began complaining of back and stomach pains.

The doctors had another idea. Perhaps the I.V. pic line had become infected inside his chest which sometimes happens. They decided to remove the long internal tubing and swab the end for a staph culture test. The test later confirmed a positive culture, although minimal, for staph.

By Wednesday evening, another pic line was surgically inserted into his other arm and the powerful antibiotics were restarted. The doctor also ordered additional blood tests and an abdomen CAT scan. It was all Taylor could do to drink the large jug of CAT scan contrast mixed with orange Gatoraid without losing it all; but he successfully managed to keep it all down.

The CAT scan was conducted and revealed some spots on one kidney that drew some concern. The infectious disease doctor then consulted with a pediatric kidney surgeon to review the scan results. They felt confident that Taylor was fighting a kidney infection known as phylonephritis and an additional IV antibiotic was started specifically for kidney infections. The only problem was it usually took two to three days before the additional antibiotic would begin to work.  Taylor continued to remain hospitalized as the shaking, teeth chattering and vomiting returned while we waited for the high fevers to subside and the kidney infection to be cured.

Thankfully, my mom spent several days and overnight evenings with Taylor and I which was wonderful company. We played quick games of cards together and Mom and I shared the grueling demands of comforting back rubs which Taylor requested frequently to help ease the increasing pain over his right kidney. With Mom nearby, I was able to catch a few quick naps on the floor with a pillow and blanket beside Taylor’s bed while Mom kept company with Taylor. Soon, Mom insisted I use the only chair in the room, a recliner, while she took turns napping on the floor. I resisted her command knowing she was still recovering from a mild heart attack several months earlier, but she insisted and won the battle.

By Friday, June 9th, 2006, Taylor’s condition was still worsening as the back pain intensified. Toradol was added to his IV cocktails for pain management and I continued to give frequent back rubs to help ease the kidney pain which now appeared to include his left kidney area as well. The hospital was also experiencing overcrowding in the pediatric wing that evening so Taylor was moved from a private room to a shared room.

The room change was particularly difficult for Taylor as his new roommate was a lively, energetic boy Taylor’s same age who had experienced an ATV rollover. He was admitted for overnight observation. The novelty of the roommate’s accident produced a constant parade of visitors who brought laughter, cheerfulness and gifts. Taylor was feeling so ill and was in such pain that the neighboring joyfulness created frustration and anxiety for him which worried me. Constant attempts for Taylor to eat something, even fast food carried in by family and friends as suggested by his doctor, were unsuccessful. He was slipping into an emotional, hopeless despair which was alarming.

After spending five days at the hospital with Taylor, I had been planning to go home that evening for some rest at the urging of my family; but I knew he continued to need me there for encouragement and I did not want to leave. At one point, my mother asked to speak with me in the hallway. I felt certain she was going to insist that I go home for the night to sleep in a bed and I was prepared to voice firm resistance. Instead, she too was alarmed at Taylor’s worsened condition after a return visit twenty-four hours later and said, “Cheryl, I know you were planning to go home tonight, but I think it’s important you stay here tonight. I’m very concerned.” I was very thankful for her understanding and support and second “motherly” opinion.

By Saturday morning, Taylor and I had survived yet another long, grueling night of back rubs with interrupted breaks while I paced the hallways and prayerfully cried in a secluded restroom down the hall. The roommate, who rarely slept and accompanied us all night with his noisy gifts and loud television a few feet away, was released early that morning. The room was comfortably quiet once again.

The doctor’s morning rounds brought some surprising news. One of the many blood tests taken the day prior now confirmed Taylor had an extremely high count associated with the mononucleosis virus. This news seemed to explain his sore throat, lethargy and the fact the antibiotics would not combat a virus and the associated fever. Tests also confirmed, as we already knew, that Taylor was alarmingly malnourished due to his previous nine day hospital stay as well as the current 5 day stay. The doctor also knew the night was rough and he issued orders for Taylor to be transferred to a private room once again.

By Sunday however, the back pain was increasing and the high fevers were not ceasing. Constant back rubs over both kidney locations were required to help ease the pain. Then, around 11:00 that evening, I noticed a rash beginning on Taylor’s arms and chest and a slight swelling of his fingers, feet and toes. I was prepared for the rash as a symptom of the mono virus, but not the swelling.

I notified the nurse who in turn called the doctor late that evening at his home. The doctor ordered immediate suspension of the kidney antibiotic, a urine and stool sample and another early morning kidney CAT scan. The nurse also wheeled a scale into the room and Taylor, who was so weak from not eating all week, could hardly stand. He did manage to slowly crawl out of bed with assistance from the nurse and I as he stood on the scale for his weight measurement.

We immediately knew we were in grave danger when Taylor’s weight revealed a gain of seven pounds since Monday. Eight hours later, four additional pounds were gained. Taylor’s body was retaining fluid. His kidneys were failing.

Early the next morning, it was Monday, June 12th, 2006 and the hospital was all abuzz with a new week of activity. Taylor had amazingly managed to sip another large jug of contrast for the second kidney CAT scan and kept it down.

By mid-morning, I met with the infectious disease doctor at the nurse’s station to discuss the latest developments. This had become a new practice to meet outside the room to discuss issues. Taylor had become increasingly upset in recent days listening to scary details as the doctors explained test results and concerns with us in the room. On this morning in particular, I was relieved Taylor didn’t hear the doctor’s comments.

As I approached the nurse’s station I could see the doctor was visibly upset as he reviewed Taylor’s chart, overnight developments, recent test and scan results. He looked at me and said things were “very bad”. This time the scan revealed both kidneys were affected with many more spots of concern.

He told me he’d been in contact Sunday evening with a doctor from Riley Children’s Hospital in Indianapolis discussing Taylor’s case because test results “were a mess”. He frantically clicked his ball point pen and ran his other hand over his forehead and through his hair in complete despair as he stared silently at Taylor’s chart. He did not know what more to say or do. Then without another word, he walked away quickly telling me over his shoulder, “I’ll get back with you later”.

Filled with fear, I immediately went to retrieve my cell phone from Taylor’s room while he slept. I wanted to call Chris with the latest developments. However, when I entered his room, Taylor was fighting to stay awake as he waited for my return. He had watched me through his door window talking to the doctor and as I approached he asked, “Mom, what did the doctor say?”

I hid my fear and calmly replied, “Oh, they’re still waiting for more test results. I’m just going to call Dad and let him know we’re still waiting.” The answer contented Taylor as he nodded in agreement and drifted back to sleep.

I returned to the hallway to call Chris who was trying to work back home. Chris had been spending each evening for the past week with us at the hospital and then traveled 45 miles home by late evening for work the next morning. One of us had to work to keep the family finances in order. Sometimes though, he would sleep overnight in the room’s reclining chair to be near us throughout a difficult night then drive home early the next morning for work.

After I relayed the doctor’s comments and behavior to Chris on the phone, he said, “I’ll reschedule my appointments and be there in an hour.”

As I awaited Chris’s arrival, the doctor returned and summoned me to the hallway. He explained that he had been reviewing the many tests and count numbers within the last week and none of them were good. He then said they were consistent with counts associated with “malignancies”. I froze in utter disbelief of the word. How could that be?

I immediately suggested the idea of transferring Taylor to Riley Children’s Hospital in Indianapolis for specialized care. We had been receiving pressure from family and friends all week to have him transferred as his condition continuously deteriorated. The doctor responded that the odds were 50/50 of a transfer because he was doing everything they would do.

Chris soon arrived and he and I began discussing plans in the hallway for firmly demanding a transfer. As we were quietly talking, Taylor’s orthopedic surgeon arrived for his daily morning round. He would review Taylor’s charts and tests each morning and often was seen on the phone while at the nurse’s station following up with the infectious disease doctor and other contacts. Even though Taylor’s knee was no longer the source of concern, the orthopedic surgeon and the resident orthopedic doctor who saw us in ER weeks ago, continued to check on us daily to stay updated on our unusual medical case.

After we discussed the latest test results and the infectious disease doctors comments with the orthopedic surgeon, he agreed that Taylor needed to be transferred and he left to make some phone calls.

By mid-afternoon, I was summoned to the nurse’s desk for a phone call from the infectious disease doctor.

“Hello,” I said as I answered the phone.

“Mrs. Ramsay, I am calling to tell you that I am giving orders for Taylor to be transferred to Riley Children’s Hospital in Indianapolis,” the doctor quickly blurted.  “Taylor’s case has become out of hand and is over my head now,” he continued. “The transfer will take place within the hour. Good luck and please keep in touch,” concluded the doctor. “Doctor,” I interrupted before he hung up, “Taylor’s kidneys are still working, aren’t they?” I asked. “Well, they were last night,” the doctor promptly responded.

“Okay, thank you,” was all I could say as panic overcame me and I hung up the phone.

When the ambulance paramedics arrived ten minutes later, Taylor was in extreme back and stomach pain and the nurses were giving him as many Morphine shots allowable. His body was swelling quickly and the rash that started to appear the night before had turned into full blown hives all over his entire body.

There was a flurry of activity in the room as nurses prepared Taylor for transport. Additional nurses helped Chris and I gather our belongings and sign release and transfer papers. One of the paramedics quickly explained the route they would take to the Indianapolis hospital since I would be following behind in the family car.

All IV’s including antibiotics, pain medication drips, and hydrating saline solution had been discontinued as of early that morning. During the rush of activity, we were quickly reminded he was not to eat or drink anything in case surgery would be necessary upon arrival at Riley. He was so ill, there was no chance he would eat or drink anything.

As the paramedics attempted to transfer him from his bed to an ambulance gurney, he yelled out in pain with the slightest movement. He no longer could lie on his back. Everyone paused as the nurse gave him another quick shot of morphine before the paramedics moved him to his side and belted him to the gurney.

Taylor was quietly moaning in a semi-conscious state and for the very first time ever, the tough, athletic teenager began to softly cry. Fear overcame him with the sudden activity and he knew a transfer to Indianapolis meant things were bad.

His nurse was moved by the brave young teenager that she and the nursing staff had grown to know well and care for during his two, week-long stays. She knelt down beside the gurney just before the paramedics wheeled him away and gently rubbed his arm to soothe him. As he softly cried, she attempted to whisper comforting words to him as she said good-bye, but she couldn’t continue. She turned away quickly too choked with emotion to speak.

The ambulance transfer to Riley’s Children Hospital in Indianapolis seemed to fly by as I followed behind in the family car. Chris was allowed to accompany Taylor in the ambulance, but sat in the front passenger seat beside the driver. Two paramedics assisted Taylor during the transport monitoring his vitals and administering additional morphine shots to make him as comfortable as possible during the bumpy ride.

I spent the entire 2 hour drive following behind the ambulance crying and praying out loud. I asked God many questions as to why this was all happening. I watched the cars pass by heading northbound on the interstate as we traveled southbound and asked God, “When this is finally over and we travel back home will we be bringing Taylor home with us?” I remember clearly feeling a strong, comforting presence that filled my being with the knowledge “he will survive.”

However, in the weeks ahead, my heart would remember those heavenly three words for comfort… as the nightmare continued and my mind doubted God many times.

                                       **** to be continued ****

"So keep up your courage, men, for I have faith in God that it will happen just as he told me."     ~ said Paul in Acts 27:25