20 ~ (August 25–November 9, 2004))
The Altar of Burnt Offering
“Suppose God wants to teach you to say, ‘I know how to be abased’—are you ready to be offered up like that? Are you ready to be not so much as a drop in a bucket—to be so hopelessly insignificant that you are never thought of again in connection with the life you served? Are you willing to spend and be spent; not seeking to be ministered unto, but to minister? . . . See that you do not give way to self-pity when the fire begins.
“We look for visions from heaven, for earthquakes and thunders of God’s power, and we never dream that all the time God is in the commonplace things and people around us. If we will do the duty that lies nearest, we shall see Him. . . . It is in the commonplace things that the deity of Jesus Christ is realized.” (Oswald Chambers, My Utmost for His Highest, Feb. 5, 6, 7)
Transplant surgery began at 10 p.m. Our dear, thoughtful friend Débora did waiting room vigil with me. With us we kept two-year-old Ricardo (whom we had met in the ICU shortly after his transplant), because his mother desperately needed a good night of sleep and for us it was easy to manage his TPN, IV fluids, tube feedings and medications. We made a little pallet for him in a corner of the waiting room.
While the surgeons labored and little Ricardo slept, Débora and I put together a beautiful jigsaw puzzle of an angel with wings outstretched over a little child. It was a visible symbol of what we knew was taking place in the operating room down the hall. It also gave us some comfort as we agonized in prayer for the family who had given to Karis the intestine of their 11-year-old son, who had suddenly and traumatically been taken from them.
We completed the puzzle just in time for Ricardo's 6:00 a.m. tube feeding. Bea, a friend from Ascension, brought enough breakfast to feed all of the friends who appeared in the waiting room with the dawn. We ate it in honor of Ted's birthday, the Ted who created and managed Karis's website and had been favorite mission "uncle" in Brazil to all of our kids.
Megan and Emily, Three Nails friends, went off to rescue our son Dan, whose borrowed car had broken down an hour outside of Pittsburgh. They walked into the waiting room just in time to hear one of the surgeons, exhausted but triumphant, explain how pleased they were with how well the surgery had gone. The donor intestine was perfectly healthy and just the right size for her. Asked about how Karis's own intestine had looked, he said, "Oh, it was awful! We were so happy to get it out of there." Because Karis had gone into the surgery strong and well, they expected her to make a record-breaking recovery.
At first, it did seem that Karis was going to break all the records for recuperation from transplant surgery. By the end of the very first day, she insisted on pulling out the breathing tube, and in three days was out of the ICU. She had a couple of bouts of rejection, but that was to be expected. Within a record five weeks we were preparing to take her home from the hospital. And for one weekend we did have her home.
On Tuesday after that wonderful weekend at home, we took Karis back to the hospital for her first outpatient scope and biopsy of the new intestine. Before we even got back home, my cell phone rang. "Turn around and bring Karis back to the hospital. She's in rejection again, but it doesn’t look too serious. We'll need to treat her in-house for a few days."
Steroids didn't work.
Stronger drugs were brought out. "The big guns."
Nope.
Even bigger and stronger drugs. The ones you can only take for twelve days your entire life or the drugs themselves will kill you.
After eleven days it seemed that the good guys were winning. The scope through her ileostomy looked a lot better.
Since she was feeling better, Karis was granted a pass out of the hospital to visit the fall plant exhibit at the Pittsburgh Conservatory. No one even suspected that the water used at the Conservatory to spray the plants was contaminated by a little bitty organism called Legionella. Everyone who visited the Conservatory breathed in this contaminated spray, but Karis’s extreme level of immunosuppression made her vulnerable to developing a pneumonia called Legionnaire’s Disease. We didn’t know this, though, for several more days.
Meanwhile, Karis started bleeding from her intestine. And feeling terrible, with absolutely no energy or appetite. Tina and I dragged her out of bed on November 2nd to vote in the presidential election, but she went straight back to bed. Then came coughing, and trouble breathing . . .
No one knew what it was at first. She was in a coma, on a respirator in ICU, getting visibly sicker by the minute. They were doing everything they knew to do but nothing was working. She was transferred from a normal respirator to an oscillator, that horrible machine that shakes the whole body while it forces oxygen into the lungs. Within 24 hours of the onset of breathing problems, there was only a tiny section at the top of each lung that was not consumed by infection. The docs gave us no hope. I sat in the ICU waiting room with our pastor and planned Karis’s funeral. He was also planning the funeral for our friend Martha, who had died that week. We sat there and discussed how to manage the timing of everything, so that both Martha’s and Karis's lives could be properly celebrated.
That’s the fast track picture. Time was out of control, going way too fast. The infection was consuming Karis’s life so aggressively that there wasn’t time even to grasp what was going on. To understand the miracle that God wrought, I have to go back and tell you a few more details from behind the scenes.
Because a scope through her ileostomy did not reveal the source of the bleeding from Karis’s intestine, on Wednesday evening November 3rd she was taken for a CT scan of the abdomen. Thursday morning Karis went to the OR for general anesthesia while they put a scope down her throat to look at her intestine from the top, a fairly quick procedure. In the pre-op waiting room, the anesthesiologist asked why Karis was on oxygen. She explained that during the night she had experienced some trouble breathing. It didn't seem to be serious, but she was more comfortable with oxygen. I kissed Karis and waved her off to the OR, expecting to see her again in about an hour.
Meanwhile, one of the transplant surgeons was examining the films from the abdominal CT scan performed the evening before. A small portion of Karis's lungs was "accidentally" included in the scan. The surgeon noticed what appeared to be nodules in the bases of Karis's lungs. Alarmed, thinking it looked like a yeast infection, he called down to the OR and asked them to add on a bronchoscopy while Karis was under anesthesia. A lung expert was called in, and I was summoned from the waiting room to sign the consent.
The lung doc was so concerned by what he saw that instead of waking her up from the anesthesia, he sent Karis directly from the OR to a respirator in the ICU. Samples taken from her lungs were sent off to the lab for culture. Until the results came back, infectious disease docs treated Karis for what seemed most probable--a yeast infection—along with broad-spectrum antibiotics in case it was something else.
It was something else. Nothing worked. The treatment was wrong, but no one knew why. Within hours, Karis was dying, her lungs consumed by an unknown assailant.
Social services and hospital chaplains were called in to give support to our family. A special waiting room was designated for our use. We were no longer allowed to be in the ICU with Karis because so many nurses, docs and technicians were around her bed working desperately to save her life. Dave was frantically trying to find a flight from Brazil for himself and Valerie. Dan flew in from New York and Rachel from Wheaton. Ascension friends took turns staying with us, praying and crying with us, bringing in food that no one cared to eat.
On Friday afternoon, the head of infectious diseases came to our waiting room. "I have a tiny, tiny glimmer of hope," he told us.
The infectious organism had been identified: Legionella, a bacteria no one would ever have suspected. It had only been identified this soon because the laboratory expert who had been assigned to Karis's cultures "happened" to have done his Ph.D work in Legionella research! The doctor told us he didn't think there was another person in the hospital who could have made that identification.
Infectious disease docs were at that moment consulting experts from CDC and from the VA hospital about how to treat the pneumonia, which we could now call Legionnaire’s Disease. The question was whether the ICU team could keep Karis alive long enough for antibiotics—the right antibiotics—to work. Each hour that Karis stayed alive would keep that tiny spark of hope glimmering. If she survived the night, we could consider that the spark had become a tiny flame.
Dr. M, our head transplant surgeon, came out to the waiting room and prayed with us. Dan and Rachel took over the vigil, insisting that I go home to sleep. There was nothing I could do at the hospital, and I would need some wits about me for whatever would come next. Friends in Brazil pulled strings so that Dave and Valerie could get on a plane Friday evening, to arrive in Pittsburgh through Newark Saturday morning. With no access to news while on the long flight, they didn't know when they boarded the plane whether Karis would still be alive when they arrived in Newark.
How she survived that night, no one could explain. ICU docs later told us she was the sickest kid ever to survive in that ICU.
Clearly, God wanted Karis to live. If any one of the following circumstances had been different, she would have died:
- The scheduling of the CT scan, done after hours late in the evening Wednesday
- The lower part of Karis’s lungs showing up in the scan
- The scheduling of the endoscopy for Thursday morning, which had to do with her bleeding intestine, not her lungs
- The timing of the review of the CT scan results, which allowed a bronchoscopy to be included with the endoscopy. We were told that even later that same day, Karis could not have tolerated a bronchoscopy. The bronchoscopy revealed how sick Karis’s lungs were, that she needed to be on a ventilator, and yielded the samples for culture that led to use of the right antibiotics.
- The fact that the one person in the hospital who could recognize Legionella early in the culture process was on duty and assigned to monitor Karis’s cultures.
Beside Karis’s inert, unresponsive body in the ICU, surrounded by all the machinery and the busy nurses battling for some semblance of normalcy in her vital signs, I struggled in prayer to understand what God was doing. Was this bed the altar upon which her earthly life would be consumed? Profoundly dismayed by her suffering, again and again I offered her up to God, saying with all the capacity that I had, “Your will be done.” During one such moment, Dr. M walked in, and I startled both myself and him by saying, “God wants her to live. She wants to live.” In that moment I think that Dr. M, who is a man of prayer, understood more than I did. I was saying more than I knew.
Even as the antibiotics began to work, it was a long battle back. Hour to hour Karis was evaluated for whether she was strong enough to endure surgery to remove her transplanted intestine. The transplant doctors explained that they had stopped immunosuppression, because they couldn't both save her intestine (which looked terrible through the scope Thursday morning) and save her life. She needed her immune system back to help with the fight against the Legionella. The doctors had to identify the narrow window of time in which her lungs were strong enough to tolerate major surgery but before she would die from massive infection and rejection in her graft.
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