21 ~ (Nov. 10, 2004—December 2005)
Bezalel and Oholiab
“Then the Lord said to Moses, ‘See, I have chosen Bezalel . . . and I have filled him with the Spirit of God, with skill, ability and knowledge . . . Moreover, I have appointed Oholiab to help him. Also I have given skill to all the craftsmen to make everything I have commanded you’” (Exodus 31:1-3, 6).
On Wednesday morning we were told, “this is it—now or never.”
Our skilled “craftsmen” were Dr. M, Dr. B, and three Dr. S’s. The surgery to remove Karis’s infected, disintegrating intestine, with her lungs so desperately compromised, was much more difficult than any transplant surgery. The entire transplant team was there, along with one of the head doctors from the ICU, whose whole focus was to help the anesthesiologists keep Karis breathing. How grateful I was that our family was there together, that I wasn’t sitting in that waiting room alone (as I had done through so many of Karis’s surgeries over the course of her life).
Our dear friend Ted, whose birthday we had celebrated on the day of Karis’s transplant, came from Brazil to give us support. Ted sat with us through the long, anxious hours of that surgery, as any moment might bring us the news that Karis hadn’t survived. After we had prayed our hearts out, our son Dan set up his computer in the waiting room so that we could watch a silly movie to help the time pass.
“It’s over. She made it!!!” Even as we celebrated the surgeon’s report, we were aware of how ironic it was to be so happy to be returning to zero, actually much less than zero, because now Karis had no intestine at all. The transplant had failed. (And Karis didn’t even know—it would be a month yet before she regained consciousness.) As far as transplant was concerned, we were told that Karis would be in no shape to re-list for another intestine for at least six months. But where there is life, there is hope!
The surgeons told us that her transplanted intestine was in such bad shape that even without the Legionnaire's Disease, it would have been only a matter of time—a few more days, perhaps--before she would have lost it. Her body did not like that intestine and had been very serious about rejecting it. Of course, that would have been much easier to handle without Legionnaire’s.
Once the surgery was over, the struggle to overcome her pneumonia continued. We measured Karis’s progress by numbers: ventilator settings, blood tests, monitors, the number of IV lines (at one time, it was 21, counting both venous & arterial & all the branches), the number of medications. We knew she was improving when only one nurse was assigned to her, rather than two. David coped with the situation by tracking all of her numbers and by pestering the nurses and doctors with questions, which they patiently answered. I soon reached a point of saturation with numbers, and just focused on doing anything I could to make her more comfortable, to exercise her limbs, to create a pleasant and safe atmosphere.
Our family did vigil around the clock. We prayed intensively that God would protect her soul and spirit while she was unconscious. We sang and talked to her, read her Scripture and stories, played music, massaged her body with fragrant lotions, helped with her baths and physical therapy, braided her hair. While on the oscillator, Karis had been too sick to turn. When the nurses tried to shift her position, her numbers plummeted. The result was a massive bedsore all the way to her bone that would take months to heal. For the rest of her time in coma, we worked hard to avoid further breakdown of her skin.
Karis was maintained paralyzed because all of her energy had to go into breathing. This fact, we learned later, was a major feature of the nightmares she had during this coma. Unable to move or to communicate in any way, in her coma-dreams Karis experienced every kind of abuse known to mankind, despite our intense prayers for God to protect her mind and heart. However, she told us much later when she was once again able to communicate, at all times she knew that she was not going to die. We who observed her inert body had no such assurance.
“Living” in an ICU is a unique experience. It is a closed environment, sealed off from the rest of the world, even the life of the rest of the hospital. There is an emotional intensity that is palpable, and that varies according to the particular crises going on at any given time. Since we were in a children’s hospital, the drama was even more vivid, I think. It is hard on everyone to see a child die, especially when such amazing investment is made to save their lives. But many of them did recover, and were able to move out of ICU to regular hospital rooms, even others like Karis for whom there initially seemed no hope. I have the utmost admiration for the doctors and nurses and technicians who are able to give, and give, and give, so graciously and with so much tenacity, in such a stressful environment.
The ICU at Children’s was two large wards, with ten beds each, connected by a hallway with four private rooms where the sickest patients were kept. For most of Karis’s 74 days in ICU, she was in one of those private rooms. There were windows high on the back wall which sometimes let in a little bit of winter sunshine. We seemed to be right on the path of the helicopters which several times a day whirred past on their way to landing on the roof of the hospital. Helicopters figured heavily in Karis’s coma-dreams, as well as many other “links” to the world the rest of us occupied. It was fascinating, later, to hear Karis tell her other-world experiences and be able to identify things that had happened to her in “real life” that might have prompted those nightmares.
In late November, we were informed that Karis had reached her lifetime limit with our insurance company. The transplant financial counselor went to work to get her transferred as quickly as possible to Pennsylvania Medicaid. Even so, thousands of dollars “fell through the cracks” between the two, that neither one would pick up. How God supplied that money is another whole story. Her dad by then had returned to important commitments in Brazil.
In December, Karis was well enough to wean back the drugs that kept her in coma, and gradually wean off the respirator. For a few days she was well enough to move out into one of the ten beds in one of the large wards. This was good news, a huge step forward for her, although it also meant that another child was now sicker than she was. Now she was surrounded by the constant whir and clicks and beeps of not just her own but a plethora of high-tech machinery being used by nine other patients. Only a curtain separated her from the high-intensity drama on either side of her bed.
Karis came out of her coma in a high state of confusion, which led to panic. Her nightmares had been so vivid that she thought they were real. She couldn’t tell the difference between her coma-world and the “real” world. She had suffered so much abuse in her coma-dreams that she mistrusted everyone. She was sure that the nurses were trying to poison her with the IVs, that the doctors had evil intent. Her aunt came to visit, and Karis recoiled from her. Thank God, she still trusted me. I was the only one, however, who was able to give her any comfort, any sense of security. If I left, even for a few minutes, Karis entered a high state of panic. She couldn’t sort out day from night or real from surreal. She couldn’t yet understand what had happened to her. I waited to tell her the details, wanting her to be more stable before she had to deal with the huge losses she had suffered.
One day, though, Karis asked the nurse for access to a computer. She went to her web page and started reading about what had happened to her in the last month. When she reached the part about losing her transplanted intestine, Karis asked me if it was really true. Then she pushed the computer away, turned her head, and refused to talk any more about it. The whole situation was too overwhelming to absorb all at once.
Karis’s body was weak and fragile. Her sixth day out from her coma, supported by three people, she was able to sit up for the first time. On that same day, she spiked a fever that sent terror into all of our hearts. Within hours, her scarred lungs were consumed by a second pneumonia, this time both viral and fungal. She was back in a coma, back on a respirator, with fevers soaring over 106 degrees. Once again we were battling for her life. For four more anxious weeks we did coma-vigil. We didn’t know yet about the nature of Karis’s nightmares during her first coma, but we had experienced her emotional distress when she had come back to consciousness. We redoubled our efforts to let her know we were there, fighting her battle with her, giving her all of the support that we possibly could.
In God’s sovereignty, during this time our son Dan was between jobs. He spent hours, days, weeks in Pittsburgh, sharing hospital time, helping me take time to sleep, to eat, to be outdoors. He was a huge support to me and gave himself generously to help our family survive this immense assault. (And when the worst was over and Karis was out of ICU, God gave Dan a wonderful job in Washington DC.)
A particular Scripture meant a lot to me during those endless hours closed in with Karis in the ICU. Psalm 18:19 says, “He brought me out into a spacious place; he rescued me because he delighted in me.” I started praying for God to create for us a spacious place even while still there in the ICU, a soul-space with room to stretch and roam and be free even when physically our muscles cramped from such long sitting or standing beside Karis’s bed, sometimes trying to sleep with our bodies in the chairs and our heads resting beside hers. “Make our insides bigger than our outside,” I prayed. “Don’t let our souls cramp up and wither and die in this place. Help us to perceive your presence with us, your beauty and grace and faithfulness, even here. Help Karis to perceive, somehow, your precious presence with her as well.”
Karis emerged from her second month-long battle utterly debilitated. The pneumonias had ravaged not only her lungs, but every system of her body. She was not strong enough to lift her hand from the bed, or to push the call button for the nurse. I’ll never forget, though, her very first whispered words when, after the punishing tube was finally removed and she was allowed to suck an ice chip to relieve the fire in her throat. “Ice chips are the best thing in the whole world.” My eyes fill with tears even now as I think about Karis there in that ICU bed, coming back from the very edge of life on earth, her body and soul ravaged, unable even to move, whispering those words from a grateful heart. They are so typical of Karis, of her graciousness and gratitude for each person whose life touched hers, for each small or big attempt to ease her suffering.
When Karis was moved from ICU to the transplant floor on Jan. 17th, her life had been saved, but the struggle to return to any sense of normalcy had only begun. That struggle marked the rest of 2005. Karis had to recuperate physically, mentally, emotionally, and spiritually. As her body gradually got stronger, she slowly reconquered basic abilities: to sit, stand, walk, talk, to read and write, to process things logically. It took her a long time just to understand what had happened to her, and to realize that she had to start the transplant process all over again.
Karis’s losses were immense, including almost complete dysfunction of her right foot and leg. She had no intestine, so she couldn’t eat, not anything—but her tummy didn’t understand this and still got hungry. From her abdomen protruded two large drainage tubes and collection bags that she had to drag around with her wherever she went. Her hair fell out, due to the high fevers of her second pneumonia (kind friends gave her a lovely collection of hats!). Completely dependent on TPN, she had frequent, frightening line infections. For weeks she was hooked up to a vacuum pump to heal the bedsore on her tailbone. It took months to find the courage to even think about risking another transplant.
After several days straight spent with Karis at the hospital, I sometimes couldn’t remember where I had parked the car. There were times that I was so weary that I stumbled straight to the bed when I got home, without even turning on any lights. Alarmed at my erratic habits, my son made me promise that I would eat at least two meals every day. Yet through that entire year of 2005, God kept me strong and well. I didn’t miss a single day at the hospital due to my own health!
A few days after Karis was strong enough to transfer to a rehabilitation hospital, she had to return to Children’s due to severe pancreatitis, an intensely painful condition that required high levels of narcotics. It was not at rehab but back at the hospital that Karis gradually learned to walk again, using a brace on her right foot and leg. Her therapist, Andy, worked as hard as she did to achieve this victory, taking her from not being able to lift her hand, all the way to walking independently, with the help of first a walker and then a cane.
By the time Karis was able to go home for the first time, she had been an inpatient for seven months straight. So many people helped us through, a day at a time. The “iPOD for Valentine’s Day” is another whole story, when we were overwhelmed by love and kindness from all over the world!
The pancreatitis became chronic. Because Karis was completely dependent now on TPN--with no intestine, unable to eat at all--her liver began to fail. She sometimes got so desperate to eat that she perfected the technique of “chew and spit”—but if she swallowed anything, her tubes would clog and she would throw up.
In May, Karis was re-listed for transplant of small bowel, duodenum, stomach, and pancreas. In August, the decision was made to include the liver. By then her friends were calling her the “golden goddess.” She almost glowed from the jaundice caused by irreversible liver failure. Her skin itched constantly and her re-grown hair became brittle and almost green from malnutrition as TPN was cut back to prolong function of her liver. We rubbed safflower oil into her skin several times a day once they stopped giving her lipids in the TPN.
The longest periods Karis had out of the hospital in 2005 at any one time were five and a half weeks. She had two of those periods, both of them wonderful gifts from God. During the first, from mid-May to mid-June, Karis was able to visit her Notre Dame classmates before they graduated, and then spend a month at home in Brazil (see Chapter 22, “Another Airplane Story”).
During the second of these periods out of the hospital, July 11-August 17, I revised a twelve-page care manual that I had written in April for two of my sisters, who cared for Karis so that I could spend some time in Brazil with David and my daughter Valerie. This time the manual grew to 18 pages and it was Karis’s dad, followed by our friend Barbara, who learned Karis’s complex home routine so that I could have three additional weeks in Brazil with Valerie. Karis had an extra-special time with her dad because he had never before taken on her hands-on care. (Note from Dave: For the first time I really understood what was required to care for Karis 24 hours a day, 7 days a week. I had little time or energy left over for my own interests! It was the best thing that could have happened in order for me to understand Debbie’s day to day life at that time.)
After I got back from Brazil, the doctors felt Karis was strong enough for transplant. We knew that any time the phone rang, it could mean organs had been found for her.
Karis was so miserable that she couldn’t wait for transplant day to come. Anything seemed better than what she was living with day after day. The pain, the weariness, the drugs, the tubes and drainage bags, round-the-clock IV’s, the line infections, the inability to focus or concentrate, increasing lethargy and lack of energy as her liver deteriorated, her blood tests coming back steadily worse . . .
But for me, each phone call induced a panic reaction. Karis had gone into the first transplant relatively strong and well, and everything had gone wrong. What reason did we have to think that another transplant—this time of five organs and a very sick girl—would be different?
The first couple of people I approached to talk about the distress I was feeling patted me on the back and talked about faith and trusting God—“After all, she is alive, isn’t she? Think about how faithful God has been!” Finally, someone let me cry, and talk it out—de-pressurizing pent-up emotions that I didn’t have space or time to process during all of the months when simple survival had to take priority.
After that I was able to start trusting God again, and not dread so much the ringing of the phone. Soon the question became, would Karis live long enough for organs to be found for her?
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