Taylor's Miracle ~ Part Four

The ambulance arrived at the emergency room doors of Riley Children’s Hospital at around 7:00 Monday evening, June 12^th, 2006.  Taylor was wheeled into a private emergency room and attached to monitors to record his vitals.  I was shocked to lay eyes on him again after the two hour drive from the transferring hospital.

He was now extremely bloated.  His entire face was so swollen that he could hardly move his lips to speak.  His previously thin chest that clearly showed his sternum and every rib, was now so bloated that it looked like a barrel had been implanted inside his torso.  His hands and feet were so puffed I was afraid his fingers and toes might pop if it became any worse.  The hive blotches had also grown much larger over his face and body and now appeared to blend all together changing his pale skin to a deep reddish purple sea of welts.  If it wasn’t for his trademark curly, red hair he would be completely unrecognizable. 

And then we waited. We waited for hours as occasionally a nurse would stop in to physically check on Taylor. We watched outside our door as emergency room staff tried to sift through the huge file that was Taylor’s medical history from the transferring hospital. Since his vitals were stable and monitored via computer at the ER desk, they took time to review the vast amount of paperwork.

Finally, an emergency room doctor entered the room, introduced herself and asked, “So what’s wrong here?”

Chris and I looked at each other and then at her in shocked disbelief knowing they’d been searching his file for hours. Unable to utter a word of where to start, the attending nurse broke the silence and replied…”Uh, everything’s wrong with him. Where do you want to begin?”

Chris and I numbly listened to the nurse relay test result after test result in medical jargon they had gleaned from his file so far. The physician carefully looked over Taylor’s swollen body and reviewed vital measurements as she listened to the nurse. The doctor asked us a few questions associated with a possible spinal meningitis suspicion. Then, within a few minutes, we were left alone to continue our wait.

Additional hours ticked by. Chris and I carefully watched his stable vitals on the monitor above his bed as Taylor peacefully drifted in and out of a morphine induced sleep. He was no longer complaining of pain. Occasionally, I would softly run my fingers through his curly hair as he slept and gently try to wake him to ask how he was feeling. I didn’t want him slipping into a coma as we waited.

I couldn’t believe nothing was being done as compared to the frantic 24 hours we just experienced. Fear tried strangling me as my mind raced towards unimaginable thoughts. This wasn’t their ugly staph mess to fix, my thoughts began telling me.

”Why isn’t anybody doing anything,” I quietly whispered to Chris. “They’re just waiting for him to die in here, aren’t they?" I concluded.  As much as I wanted to disbelieve and shoo the thought away, it continued to haunt me with each additional hour of waiting.

Finally, around midnight, Taylor was admitted and assigned a bed. He was settled into a room on the general floor, attached to monitors and administered an anti-histamine for his hives. A short while later, the night nurse started an IV antibiotic through his pic line. His body immediately recognized the antibiotic and started to shake uncontrollably, his teeth chattered and he began feeling sick. I told the nurse of my concern with the antibiotic reactions I had observed over the last week. She notified the doctor and the antibiotic was stopped.

Thoroughly exhausted, Chris and I shared the one over-sized recliner in the room and collapsed for a few hours of sleep while the night nurse took over Taylor’s care.

Several hours later before the sun rose, doctors, residents, and interns from many different departments began parading in and out of the room to ask questions and take pictures. Nurses were taking blood draws from his pic line. We quickly realized that while it appeared that nobody was doing anything, many specialty doctors had combed through Taylor’s medical records throughout the night. A sense of urgency and concern once again filled the room.

We were introduced to Taylor’s new primary care doctor who was the Chief Pediatric Physician for Infectious Disease. He and his staff of resident and intern doctors convened at Taylor’s bedside asking many questions and assuring us they were working hard to get answers as quickly as possible.

The chief I.D. physician became very interested in the medical journal I was keeping as I referred to it often to help answer their questions. In the journal, I was creating our own medical history of Taylor’s experience from the very beginning. I recorded medications and antibiotics administered at home and in the hospital, symptoms and reactions, and charted as many test results as I could such as CRP and SED rates from doctor discussions.  I asked questions and journaled the doctor or nurse responses.  Nurses at the transferring hospital encouraged the use of a public computer the hospital made available in a waiting area for medical research.  I used it often with my journal notes.  The journal and medical research helped me feel more knowledgeable of an out-of-control situation.

Once, after I had left the room for a restroom break, I returned to find the Riley doctor and Chris carefully flipping through the pages of my medical journal. The doctor had asked Chris if the transferring hospital conducted a urine test for kidney infection and Chris could not answer for certain. Together they thought they might quickly find the answer somewhere in my journal. I chuckled to myself later at the sight of this powerful doctor and Chris, nose to nose, flipping through my tiny spiral notebook in search of a medical clue.

The Chief I.D. doctor issued orders for an ultrasound scan of Taylor’s abdomen and kidneys. He was concerned Taylor had endured two kidney CAT scans during a relatively short period of time and the contrast dye alone was harsh on the kidneys. He did not want to risk the hazards of a third CAT scan.

To our surprise, he also ordered an echocardiogram of Taylor’s heart. He wanted to see if the staph infection had possibly attacked the heart valves. If it had, it could be spewing staph into the bloodstream with every heart beat. They continued to search for an infectious source that was causing Taylor’s continuing high fevers and abdomen pain.

Next, a team from Pediatric Nephrology entered the room to discuss Taylor’s kidney condition. They ordered a nuclear renal scan and several IV diuretics to begin drawing the fluid build-up from Taylor’s body. Another team of specialists appeared from Pediatric Dermatology to view his hive condition and discussed a possible future biopsy. The Chief Pediatric Orthopedic physician was also present to view Taylor’s knee. It appeared everyone was well orchestrated and all were searching for answers within their specialties.

The orthopedic physician was able to quickly rule out any infectious concerns associated with the knee joint. The latest incisions from nearly three weeks earlier had healed nicely and there was no longer unusual swelling, tenderness or pain associated with the previously infected knee. He had also reviewed the clear MRI scan conducted the week prior at the transferring hospital.

It was noted, however, that the knee had very little range of motion and did not bend. Due to the medical complications, Taylor was unable to receive the physical therapy necessary after the staph infection surgery to restore function and mobility. The knee was now “locked-up” due to scar tissue and would require some extensive physical therapy in the future to regain normal use again. The doctor issued orders for a physical therapist on staff to begin rehabilitation of the knee as soon as Taylor’s other medical conditions stabilized.

Shortly after all doctors had met with us, Taylor was being prepared to leave the room for the abdomen ultra-sound, kidney nuclear renal scan, and heart echocardiogram. A nurse brought in a special gown, cap and mask for Taylor and notified us we were now in isolation until further test results became available. A sign was placed outside Taylor’s door notifying all medical staff of the precautions for isolation.

We struggled to dress Taylor’s weakened body in the special clothing for transport to the testing departments. He was too weak to walk on his own any longer and required both Chris and I to take an arm and leg and lift him gently into a wheelchair for speedy transport. The extreme pain that previously required morphine shots seemed to cause only mild discomfort now.

The kidney ultra-sound and nuclear renal scan were conducted as Chris and I sat patiently and watched from chairs nearby. The results would be discussed with us by the doctors later that day. Next, Taylor was wheeled to the cardiac unit for the echocardiogram.

When we arrived there, our new primary Chief Physician for Infectious Disease was waiting for our arrival. He had a warm spirit that comforted us as he explained procedures and details. We felt we were in good hands each time he met with us. He was there to personally observe the echocardiogram from a monitor in a neighboring room for immediate feedback. Time was precious now and he knew they needed answers quickly.

Chris and I watched the technician’s computer monitor as she conducted the echocardiogram over Taylor’s chest. Occasionally, she would pause to take a computer snapshot. She pointed to Taylor’s heart valves for our review on the monitor as they opened and closed forcing a burst of blood flow with each heartbeat; but she couldn’t give us details if things were good or bad.

When the test was finished and we were preparing to leave the cardiac unit, the doctor emerged from the neighboring observation room. He greeted us with a huge smile of relief. He said everything looked fine with the heart and valves and there appeared to be no signs of the staph infection. We celebrated the great news! He assured us they were ruling things out now and we could expect some answers very soon as all the specialty doctors would be convening to discuss the next plan of action.

Later that afternoon, the kidney physicians returned to Taylor’s bedside with the kidney ultrasound and renal scan results as well as the latest blood counts. It was very serious. As suspected, Taylor was in complete renal failure. They explained how the kidney’s internal anatomy consists of many sacks with many tiny tubules feeding to the sacks. With kidney failure, the tiny sacks become dysfunctional and in a more severe form of failure the tiny tubules become non-functional to feed the sacks. Taylor had the most severe form of failure. They also explained if the tiny tubules were severely damaged, they possibly may never recover. Taylor’s hourly blood counts also confirmed a rising BUN level and creatinine enzyme the kidneys secrete during failure.

As to why the kidneys failed, the doctors were relying on the medical history of the transferring hospital’s infectious disease doctor and his diagnosis of kidney infection or malignancy. The ultra-sound did show many spots and blotches on both kidneys that also concerned them. They told us Taylor’s scans were being reviewed by the Chief Pediatric Kidney surgeon who would be in to confer with us later about possible surgery.

Meanwhile, Taylor’s extremely weakened body continued to endure spiked fevers in addition to a new discomfort…extreme thirst. He was on restricted fluid intake now and had only been allowed a brief sip of water for his fever and anti-histamine meds the night before, but nothing more.

By mid afternoon, a urine catheter was installed so urine output could be precisely recorded once it hopefully returned. It was a horrible experience for Taylor both physically and emotionally as several young female nurses installed the device. His dad and Infectious Disease Doctor remained in the room during the procedure to help keep him calm…which wasn’t much help.

We also learned from the doctors due to the excessive demands of Taylor’s care, he was being transferred to the Intensive Care Unit. As Taylor’s nurse helped us gather our things and put them in a little red wagon, a trademark of transportation within the Riley Children’s Hospital, she said, “Taylor’s care is just too much for me and our nursing staff on the general floor. We’re so sorry….”

“We're so sorry”… we kept hearing those same words over and over again wherever we went.

As we were settling in to the Intensive Care Unit, the kidney surgeon arrived to discuss Taylor’s scans. He had been asked to conduct an immediate kidney biopsy, but he was not convinced by the scan results that we were dealing with a cancer suspicion. He said research had shown that similar kidney spots could also be allergic reactions and not cancerous lesions. He wasn’t ruling out the biopsy completely, but he asked for a little more time for further research and study of Taylor’s case history. We agreed.

Soon after, the infectious disease physician arrived with some more information and questions. A tiny urine sample that Taylor had previously supplied in the Riley E.R. had been tested. To everyone’s surprise, it confirmed no infection of the kidneys. They now were on the trail of an allergic reaction and/or medication over-dose caused by one or more of the many high powered antibiotics Taylor had been receiving for the past month for the staph infection and presumed kidney infection.

The kidney failure could have also been complicated by the contrast die Taylor had drank twice for kidney CAT scans. One of the interns explained to us the contrast was made from derivatives of shellfish. They asked us if Taylor had a shellfish allergy. We knew of no known shellfish allergies.

The infectious disease physician then prepared us for their next plan of action. They wanted to continue to keep Taylor off of all antibiotics. Having now ruled out infection of the kidneys, heart valves and knee, they were willing to take that gamble. They also wanted to begin aggressive steroid treatments in hopes of encouraging the kidneys to begin functioning again. However, a serious side-effect for us to consider was if the staph infection was still lurking elsewhere in the body, causing the high fevers, the steroids would “feed” the staph infection.

Chris and I pondered the risk briefly, but gave the okay to eliminate all antibiotics and begin the steroid treatments trusting the doctor’s recommendation.

By now, it was Tuesday evening and just 24 hours since our arrival at Riley. What a whirlwind day of doctors, tests, and conversations. We were very impressed with all the doctors, interns, resident doctors and nursing staff. We were receiving around the clock hourly care with quick feedback from test results.

The large group of chief Physicians, interns, and resident doctors from Infectious Disease, Nephrology, Dermatology, and ICU who were assigned to Taylor’s care all rotated in and out of the room every few hours. They all wanted to check his chart, ask him questions, and personally take his vital measurements. He was a rare case and everyone was learning from his unusual medical condition and history.

The next few days slowly ticked by as we waited for Taylor’s kidneys to “wake-up”.

All antibiotics had been stopped and the I.V. steroid treatments had been started. He also was still receiving two diuretic drugs by I.V. to help pull the fluid out of his tissues. They didn’t, however, seem to make a dent in his severely bloated body.

His weight was measured daily with a digital scale built into his ICU bed. He continued to gain a pound or two each day so fluid intake continued to be restricted. Every milliliter of fluid was measured going in and coming out …which was very little to none in either direction.

With the help of anti-histamines, the hives were starting to fade and we could begin to see small blotches of normal skin color return. His fevers were also beginning to subside. When they’d return several times a day, the fevers were not as high and the episodes were appearing farther and farther apart.

As certain conditions improved, other conditions worsened. The restricted fluid intake became a huge battle. Taylor was extremely thirsty making him very uncomfortable when he was awake. His tongue and mouth were dry and parched. His lips were cracked and blistered from weeks of fevers. He had not had any significant fluids by mouth for days. Hydrating saline solution by IV was calculated to a minimal maintenance level. Even the brief sips to take fever medication were carefully measured and calculated towards the allowance of one eight ounce cup of water every 8 hours.

He begged and pleaded for water in a dry, raspy voice. We kept the water cup hidden from view and would ration a sip or ice cube or two an hour. His wild, ravenous eyes shook in desperation as he begged for more while grabbing at the glass with each hourly sip.

Once after he’d finished the cup too quickly and had four more hours to wait for the next allowance, he whispered and begged, “PLEASE Mom, get me some more from the sink. I won’t tell the nurse on you, I promise.” It was horrible.

Taylor’s body was also growing weaker and weaker without food. It had been over ten days since he’d eaten. Prior to his transfer to Indianapolis, we had tried to coax him all week to take just a bite of his favorite foods or a sip of a nutritional supplement, but he was too sick to eat and would refuse. Due to his fluid restrictions, he was not receiving any nutritional supplements via I.V. either.

During the weeks of hospitalizations, we spent many hours watching television…mostly the Game Show Network. We intentionally skipped over Taylor’s love of the ESPN channel or a televised ballgame as hopes of Taylor’s return to athletic participation now appeared over. While this depressed him greatly days earlier, we were now just hoping his life would be saved. Sports no longer mattered and seemed very trivial.

While Taylor would sleep, occasionally I’d switch to a news channel for a brief glimpse at the world outside and re-enter what used to be a normal reality beyond hospital walls. During a particular news update, viewers were reminded about the Terri Shiavo court case.  She was the woman who had passed away after her family disconnected her feeding tube. It startled me when the news journalist reminded viewers how it took only 13 days without nutrition for her to pass away. Chris and I knew Taylor was only a few days away from that same duration without food and we were scared.

We discussed our worries about his malnutrition with the doctors, but they were not too concerned. They said nutrition at this critical stage would greatly disrupt and distort the counts the hourly blood draws were charting to monitor bodily functions. They assured us due to his prior good health and athletic build, we would be okay for a few more days until his metabolism hopefully improved. We cautiously agreed to wait a few more days.

Taylor’s care was now slowly transferring from the Infectious Disease doctors to the Nephrology kidney physicians for primary care. Fevers were continuing to subside and so far it didn’t appear the steroids were causing symptoms associated with feeding a lurking staph infection elsewhere in the body. We were still in isolation though, so everyone who entered the room wore gloves and special gowns they discarded immediately after leaving. The tests they were waiting for took 4-5 days for the results so precautions continued.

The doctors had hoped that by removing the antibiotics from his system several days earlier, the kidneys would have begun to show some signs of recovery by then. They also told us before the kidneys would begin functioning, the creatinine enzyme count would first begin to slowly fall, then rapidly fall once kidney function returned. However, Taylor’s hourly blood draws continued to show rising levels of creatinine and BUN counts which worried the doctors. His kidneys remained very quiet and were not responding to the steroids.

Next, the doctors began discussing dialysis with us. They wanted to install a dialysis catheter in case the kidneys did not begin functioning soon. With the catheter installed ahead of time, they would be prepared to begin dialysis immediately if Taylor’s condition quickly worsened while we waited.

Hemodialysis was the planned treatment if necessary. The dialysis catheter would be a large I.V. with a port installed at his lower neck. A long thin tube would be inserted into the jugular vein via a small neck incision and travel to the heart. The dialysis machine would filter his blood by removing the waste toxins, a normal function of the kidneys, and cycle the cleansed blood back to Taylor’s body. They wanted to install the catheter soon. It was a routine procedure and could be done in ICU at his bedside without general anesthesia. Only a local, numbing anesthesia at his neck location would be necessary for the small surgical incision.

As Taylor listened to the doctor describe the surgical procedure, he became upset. He begged to be put under anesthesia. He just couldn’t imagine enduring one more area of pain. The nephrology doctor paused in thought as he contemplated Taylor’s plea. General anesthesia would require the use of the operating room for the procedure.

“Okay Taylor, for you and all you’ve been through,” the doctor soon replied, “we will do it that way.” He would schedule the surgeon and operating room for the next day to install the dialysis catheter.

God's guidance must have directed the nephrology doctor's decision that day because one of the most rarest and unimaginable setbacks was about to shatter our hopeful progress.

                                       **** to be continued ****

"God is our refuge and strength, an ever-present help in trouble."     ~ Psalm 46:1