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4 Days in ICU

4 Days in ICU:

When we arrived at the Scottish Rite Children's Hospital ER, we were directed to pediatric ICU where Amber had been rushed upon her arrival. We quickly found Chip in the waiting room on the 3rd floor, where he told us that the attending paramedic had said Amber had started breathing on her own during their ten-minute flight. So, for the first time in this already two-hour ordeal, we started to have real hope that Amber might have a chance to survive and be restored to us in as good a condition as she was the previous night.

My sister, Judy Rogero, and her partner, Barry Healey, had arrived at Scottish Rite before Jamie, Jacob, and I had arrived. Judy and Barry were paramedics for Metro Ambulance and had been nearby on a call when they learned of Amberís accident, so they were already with Chip in the waiting room when we arrived. Within a few minutes, we were all taken to a private waiting room in ICU, where we began to make phone calls to extended family members. Soon, the pediatric neurologist, Dr. Raymond Cheng, arrived and took us to Amberís bedside where we camped for the next four days.

The neurologist told us that he was very concerned about Amberís prognosis, and that he was ordering an EEG and CAT scan to determine the extent of any damage to her brain. Within half an hour, the tests were in progress, and we all held our breaths as we anxiously awaited the results. About an hour later, the results came back and revealed that there was no brain swelling (a major concern!), but that there was some damage to Amber's brain from lack of oxygen. The doctor said that there was no way to tell if her brain damage would be permanent, and that we would have to wait and see how she did for the next seventy-two hours.

All day long on the fourth of July, our hopes were up and down as we maintained our vigil at Amber's bedside. Although she was comatose, we saw fleeting signs of responsiveness that encouraged us in our despair. Several times throughout the day, and for the next four days, Jamie asked me (Nana Margie) to sing songs to Amber - the "personal" ones I had composed for her and been singing to her since she was a newborn baby. So, periodically, I leaned over the bed and sang softly in Amber's ear. Occasionally, she would open her eyes for a brief second, and then slip back into unconsciousness. Then, when my cell phone rang, she opened her eyes again. At other times, when we'd caress her and tell her we loved her, she would open her eyes as if she heard us. So, this single, startle reflex gave us renewed hope that Amber might have a fighting  chance, even though the medical staff persisted in referring to her as "non-responsive." Also, we knew that if God chose to heal Amber that it didn't matter either way, because He could heal her in a split second, regardless of her condition! As the minutes turned into hours and the hours into days, we prayed, unceasingly, for Amber's healing.

As soon as she could get to the hospital, my niece, Katie Rogero, came and took Jacob home for the weekend so we could focus our attention on Amber and so Jacob would be spared the prolonged horror of this situation. Also, Judy and Barry had to leave because they were still on duty for Metro Ambulance. So, for the next twenty-four hours, the three of us were basically alone in ICU with Amber. We spent that time praying together, singing and talking to Amber, and doing what we could to "prop each other up" emotionally and spiritually.

Fortunately, there were genuine prayer warriors who interceded for Amber and our family during those four days in ICU. My good friend and California business partner, Harry Pickett, who had been praying for Amber's healing almost daily for over two years, was very much with us in spirit in ICU. And, my Australian friend and business associate, Susan Pangallo, who had posted Amber's pictures and prayer needs on her breast cancer support website many months before, once again martialed her troops to pray, upon receiving news of Amber's accident. Also, my close friend and former CBN co-worker, Jamie Edgemon-Smith, had the Coral Ridge Ministries in Fort Lauderdale, Florida, interceding on Amber's behalf. Plus, our good friend, Erin Harrington, started a special Amber's Forum on her parenting website to keep people continuously updated on Amber's condition. And, the congregations of our home church, Mount Paran North Church of God, and our sister church, Mount Paran Church of God, had Amber's name at the top of their emergency prayer lists over the entire weekend. Pastor Brad Moffett, Minister of Music at our church, came to ICU with several other pastors to pray for Amber. Plus, Karen Bemiss, our choir Vice President, came by ICU for an hour and kept everyone in our music ministry informed of Amber's condition via email. And last, but not least, Dr. Paul Walker, our Pastor Emeritus, made a special trip to ICU, waited for an hour when the ICU team was working on repositioning Amber's IVs, and offered a special prayer for her healing.

One thing that we learned while in ICU with Amber is that there are very few people that you can truly rely upon in situations like this. Oftentimes, we assume that our family and friends will rally around us in times of great despair and personal grief. Or, we naively assume that pastors and/or church staff members will voluntarily initiate action or offer personal support; but, more typically, the five-minute, "gotta-run" prayer is all one can really expect. Generally speaking, most people simply avoid gutting-it-out in the trenches at all cost. With the frozen stare of a deer caught in the headlights, some will avert their glance, avoid eye contact, and dash away from a crisis scene at a fast pace, as though rushing to catch a train that is departing the station. Others will lapse into casual silliness and small talk, while hovering near the door to facilitate a hasty retreat. Still others will avoid all normal gestures of intimacy, as if the person lying in a coma is contagious. And, some will simply feign sickness as an excuse for not being there at all. As the family of a disabled little girl, we were all too familiar with "how people act" around a child with severe handicaps; so, we were not really too surprised at such behaviors during Amber's four-day fight for life.

The bottom line in any crisis situation is the strength of your immediate family. Either you have the resources to stand together amidst tragedy, or you don't. Either you are rooted and grounded in Jesus Christ as Savior and Lord, or you're not. There is no middle ground in pediatric ICU. In our bedside vigil with Amber, we frequently huddled together in prayer, in tears, in deference to the will of God. We wanted Amber to live, but we knew that her life might continue in a vegetative state, and we didn't want that for her. She was too beautiful and too high-spirited to settle for that. We prayed that God would heal her, but we also understood that her healing might occur in Heaven.

On the evening of July 4th, the ICU charge nurse told me that I would have to leave. Even though there weren't a lot of other people there, she was standing on ICU rules that stated that only two people could stay overnight with a child. So, I gathered my things together and headed toward Cartersville. Chip went with me to pickup some personal items and to drive their car back to the hospital. When I left, I was angry that I was being forced to leave, but I figured they would probably call security if I didn't! I kissed Amber goodbye (the hardest thing I ever had to do!) and told Jamie to call me immediately if there was any change.

When we got home, we collected a few things for Amber: her favorite video (Jonah ó a VeggieTales Movie) and a cloth baby doll I'd given her for her second Christmas. Because of her physical condition, that cheap, little rag-doll was one of Amber's favorite toys; she'd grab it by the hair and shake it violently back and forth as she watched videos in her bed (she also did that once, in self-defense, to our deaf kitten, Lily, when Lily kept play-fighting with Amber's hair, annoying her as she lay helplessly on the floor!). Then, I went into my home library and found a box of rocks that I had collected at various historic places in Israel during our choir tour there in 1984. One rock was labeled "Valley of the Shadow," another "Mount of Beatitudes," and a third "Sea of Galilee." I put the rocks in my purse and also filled an empty French Horn valve oil bottle with olive oil from my kitchen, so that we could anoint Amber with oil and pray for her when I got back to the hospital. Finally, I located my favorite Bible and then sent a few emails to friends informing them of the situation and asking for intercessory prayer. Shortly thereafter, I tried to sleep for a couple of hours.

When I awoke and got dressed on the morning of July 5th, I loaded up the car and then made a couple of stops to inform our neighbors of Amber's accident. Word had spread about an ambulance having been there the day before, but no one really knew what had happened. When I phoned Jamie in ICU, she said that Amber was not doing very well. She was breathing on her own while still attached to the respirator, but her breathing remained agonal (i.e. shallow, brainstem breathing), and her occasional blinking response to touch and sound had waned overnight. My heart sank. I decided to call Brad Moffett again and request that someone please come to ICU and pray for Amber (and us!). I also called Dr. Walker again, and he agreed to come and pray for Amber later that afternoon; he also called Senior Pastor Mark Walker (his son) and told him about Amber, since apparently no one at the church had informed him of the situation. When Pastor Mark heard the news, he immediately started trying to call us, but our cell phones had been turned off because of ICU rules (apparently, cell phone signals interfere with their monitoring equipment, so they asked us to not use them in ICU).

When I returned to pediatric ICU at around noon, Chip and Jamie had been awake for twenty-four hours straight. Although there was a sleep room for parents in the ICU, they hadn't left Amber's bedside for a moment to either sleep or eat. Throughout the night, Jamie and Chip had read stories to Amber, talked to her, stroked her hair, prayed for her healing, and cried out for God's mercy. After I had left ICU the night before, Jamie had talked to the charge nurse and told her of my special bond with Amber: of the fact that they had lived with me since their marriage in 1997 (until we had moved to our adjoining townhomes in Cartersville in 2002); of how I had been there when Amber was born and with her through every emergency hospital visit since (and there were many!); of how I had been Amber's biggest fan and cheerleader in overcoming her disabilities; of how I had prayed for her healing, unceasingly; and finally, of how I had performed CPR on Amber's lifeless chest the day before. Apparently, the nurses were feeling a little guilty about having asked me to leave, but not enough to let me stay.

One the difficulties about being in pediatric ICU was having to deal with the personalities of the different shifts of nurses and supervisors. Whereas, one shift would be compassionate, supportive, and most accommodating to our needs, the next shift could be cold, aloof, and most efficient at "enforcing the rules." Despite these annoying and infuriating inconsistencies, however, we never sensed for a moment that any of the shifts were not doing their best to keep Amber alive; on the contrary, all ICU personnel were superior in their efforts to save her life.

On Saturday afternoon, other immediate family members came to ICU. Chip's dad, Larry Cash, and his step-mother, Sam, arrived and immediately got on the phone with Chip's grandparents, Ned and Mary Cash, who had traveled to Indianapolis to spend the holiday weekend with Larry's sister, Holly Cash. As soon a Holly, a registered nurse, heard that Amber was in agonal breathing, she privately gave Larry her condolences. Also, Jamie's mom, Sandy Boulware, and step-dad, John, arrived from their out-of-state,  holiday weekend trip to visit John's brother in Florida, where we finally located them by calling the information operator in Orlando. Everyone's reaction was basically the same; we were all intensely grieved and saddened at the thought of losing Amber Lynn. And, everyone just wanted to touch her and whisper in her ear how much we loved her.

Around mid-afternoon, Pastor Brad Moffett and Pastor David Lewis came to pray for Amber. Then, at around six o'clock, Amber's numerous IVs became problematic as her veins either collapsed or became infiltrated from the enormous strain on her body. To overcome this problem, the doctors decided to insert a more stable IV into her abdomen, which required a minor surgical procedure to accomplish this. So, they asked us to leave the room and go to the ICU waiting room; at just about that time, Dr. Paul Walker arrived, so we sat and talked with him while the doctors worked on Amber. When they completed the IV insertion, we returned to ICU, where we collectively prayed for Amber's healing.

As evening came and the three of us were alone again, I began to wonder if anyone thought that the rocks I had put in the bed above Amber's head were weird. Although, I really didn't care what anyone thought, personally, I imagined that some may have thought it a bit odd to put rocks in the bed of a critically ill little girl, even if those rocks had come from historic places in Israel where Jesus had performed many of His miracles. The neurologist had already asked probing questions of Chip upon Amber's arrival about why it had been so late in the day when he had found Amber, implying that maybe they might have been negligent in some way by not checking on her earlier. And, although he never mentioned negligence in so many words, with my counseling background and education, I fully expected someone from the Department of Family and Children's Services to show up at the hospital at any time.

Generally speaking, anytime a four-year-old child goes into cardiac arrest, there is immediate suspicion over what caused the problem, and if the parents were responsible due to negligence or abuse. I knew that neither was the case with Amber, because I had lived with Chip and Jamie since Amber was born, and I knew, firsthand, that they were exceptionally good parents. But, I also knew that the potential was there for accusation and confrontation, so I silently prayed for a divine hedge of protection around Chip and Jamie in ICU, because I knew that any such confrontations would be horrible for them to endure, especially under these circumstances. In truth, on the morning of July 4th, Amber had somehow turned herself around in her bed, scooted backwards on her back over toward the wall and the foot of the bed (just beyond the safety railing), and had gotten herself wedged between the wall and her bed. In this predicament, she had knocked a pillow onto the floor beneath the bed and had descended, face-down, into the pillow where she quietly suffocated because she couldn't use her arms or legs to free herself. Then, she went into cardiac arrest after never making a sound.

Surprisingly, everyone in ICU seemed to understand the purpose of the rocks and didn't think it a strange ritual at all. In fact, several of the nurses and supervisors remarked that they were praying for Amber. When 10:00 p.m. finally rolled around, I was again aggravated when the charge nurse came in and asked who was leaving and who was staying. Since none of the three of us had had any sleep and didn't plan on using the sleep room, I didn't see why their rules were so sacred. But, I gathered my things and got ready to leave. As I leaned over to kiss Amber goodnight, I wondered if she would be okay through the night. All evening, we had been playing her favorite Veggie Tales video and had placed her baby doll beside her in bed. Now, Jamie was about to read her a bedtime story as I headed out the door toward my car to make the forty mile drive to Cartersville.

When I arrived home, I fed our cats, parrot, and dog, and then I emailed a couple of friends with updates on Amber's condition. At about 1:00 a.m., Jamie called and asked me to bring her a few things when I returned the following morning. Then, at approximately 2:00 a.m., Jamie called again when, suddenly, all of Amber's life support alarms had gone off simultaneously. Her heart beat and blood pressure had almost dropped off the scale, and she had stopped breathing on her own and was totally dependant on the respirator. The room had filled with about a dozen ICU personnel, and they were working feverishly to get Amber stabilized. Chip and Jamie had been asked to go to the empty room next to Amber's to wait. I told Jamie to ask the charge nurse if I could come back, and she said that I could. So, I grabbed our things, fed all the animals an extra portion, and headed back to ICU, where I would remain for the next two days.

When I arrived at about 3:00 a.m., Amber had sixteen IVs hooked up to her to stabilize an assortment of life-threatening problems. She looked peaceful as she lay there with the respirator breathing for her. Gone was the agonal breathing that had caused her to take faint, labored breaths for the past thirty-six hours. All three of us began to sense a change in Amber apart from the heightened intensity of the medical staff and the sudden multiplication of the high-tech paraphernalia that was keeping her alive. Later, we would look back on 2:00 a.m. on the morning of July 6th as the time that Amber's spirit departed her body. But for the moment, we were still hoping for a miracle that would restore her to us. Individually, each of us had whispered into Amber's ear earlier in the day that if she had seen Jesus and her new, glorified body and wanted to stay with Him in Heaven, that it was okay for her to stay. For the next few hours, we huddled together and prayed intensely for Amber and for each other. We read Scripture aloud, wept together, and thanked God for having given Amber to us for almost five years. Then, I sang a few worship choruses interspersed with Amber's songs. As the words to "Holy Spirit, Thou art welcome in this place" left my lips, I suddenly lost the ability to sing as deep sobs of grief poured through every fiber of my being.

On Sunday, July 6th, Amber's paternal and maternal grandparents returned to ICU, along with other extended family members. Also, a couple of pastors from the church came by to briefly pray with us again. All day long, Chip, Jamie, and I began to sense that Amber's spirit had departed her body.  Her eyes were fixed and dilated, and the respirator and IVs were all that was keeping her alive. Yet, we continued to pray and believe that God could still perform a miracle. The doctors told us the incident at 2:00 a.m. had been a major turning point for the worse, and that on Monday morning at 9:00 a.m., they would take Amber to do another CAT scan, which would determine if any oxygen was getting to her brain. They explained that when the brain experiences injury from loss of oxygen, sometimes it will start swelling, and since there is no room for it to expand upward within the skull cavity, it will forcibly herniate downward onto the brainstem, thereby cutting off the oxygen supply to the brain. When such herniation occurs, the brain dies. They also explained that if the tests concluded that brain death had occurred, then Amber would be pronounced dead by Georgia law. The doctors also suggested that we give consideration to the possibility that Amber might again go into cardiac arrest, and whether we wanted to authorize a "do not resuscitate" order in that eventuality.

Even though the situation looked bleak, we stayed continuously at Amber's bedside. Each of us had special rituals we performed to bolster our faith: singing, reading bedtime stories or Scripture, playing Jonah ó a VeggieTales Movie on the VCR, or blotting Amber's parched lips continuously with a wet gauze (we were cautioned to be careful about getting her lips too wet because she had no ability to swallow and might drown!). Personally, I sat most of the time in a chair at the side of Amber's bed holding her right foot in the palm of my hand. By the temperature of her feet, we decided what she needed: if her feet felt cold, we covered her with blankets; if they felt warm, we took the covers off. Frequently, when her fever got to high, the nurses overruled our attempts to keep her warm by ripping all off covers and blowing cool air over her with fans. She'd lay there with goose bumps all over her body, and we couldn't do anything about it.

Since the accident, Jamie hadn't been allowed to hold Amber because of all of the IVs in her arms and body. Under the circumstances, this caused MAJOR anxiety for Jamie because she'd held Amber so much throughout her life, due to her disability, and she wanted so desperately to hold her in ICU.  On Sunday afternoon, the nurses reassured Jamie that if the scheduled CAT scan confirmed brain death, then they would disconnect all of the equipment, and Jamie would be allowed to hold her one last time. As a mother, I ached for Jamie, and I ached for all of us. We had all had the pleasure of holding Amber so much, and it was tearing us apart to have to standby, empty-handed. Jamie clung to this promise as she struggled through Amber's third day in ICU.

As Sunday afternoon drew to a close and family and friends departed, we settled down for another sleepless night. Earlier, Amber's life-flight paramedic had stopped by the room to check on her; he never said a word, just stood silently for a few moments and then left. As shift after shift of nurses departed ICU, many stopped by Amber's room or stopped us in the hall to tell us they'd be praying for her. Most of them were in tears, including the charge nurses, which struck me as a radical departure from their normal, unemotional, ICU demeanor. Several told us their personal testimonies of why they believed in prayer and healing and how sad it is in these kinds of situations when parents have no hope and no faith. All seemed genuinely saddened over Amber's condition, but they never let that deter them from their task of keeping her alive. As afternoon turned into evening, we began to discuss the possibility of organ donations. When I brought up the topic, I halfway expected Jamie and Chip to lash out at me in rage, but they didn't as these thoughts were already on their hearts and minds. We never gave up hope for Amber to survive, but we sensed in our spirits that she was already with Jesus, and since we had told her it was okay for her to stay with Him, we knew in our hearts that she probably would.

Each of us took a few hours of rest in the sleep room, but I wouldn't call it sleep. While Jamie and Chip were in the sleep room, I logged onto the Internet with their laptop computer and sent a few emails. When I finished, I stood up to walk away, not knowing that the power cord had wrapped around my ankle, and pulled their laptop off onto the floor. Fortunately, it powered back up, but the power connector had broken and some shock damage was done to the system. When I told Chip and Jamie about it, they said they didn't care. Somehow, all of our priorities had shifted to the really important things in life during those dark days in ICU.

On the morning of July 7th, they came to take Amber for her final CAT scan at around 9:00 a.m.. Pastor Ray Pace from Mount Paran North came to be with us when the results came back, and my sister, Judy, took the day off so she could be with us too. Within about an hour, Dr. Raymond Cheng came in as they brought Amber back from Radiology. For the next half hour, he went through a series of specific, intensive tests for reflexes in every part of Amber's body. Legs, arms, feet, eyes; everything was checked and rechecked. When his tests were concluded, he told us that there was no response to any of the tests and that, according to the CAT scan, no oxygen was getting to her brain due to brain swelling. He paused as if waiting for us to concur and then quietly pronounced her dead at 10:25 a.m.. All of the preparation and prayer of the past four days in ICU did not insulate us from the anguish of that final moment when we knew that she was gone. We had lost our Amber, and we would never have the pleasure of her company again until we joined her in Heaven. The agony of that moment had to be the hardest thing that any of us had ever faced. NOTHING prepares you for the loss of a child!

Brad Moffett called on the phone and Pastor Pace prayed with us and counseled that the Holy Spirit teaches us "how" to pray in these situations. One family member had suggested on the phone that maybe we had "given up" when we had told Amber it was okay for her to stay in Heaven with Jesus. But, we just seemed to know that she needed to hear that from us, as much as we needed to acknowledge it. We didn't conspire together to come up with some "super-spiritual" truth; we just came to this realization, individually, as we prayed for her. It was as though God, in His unfailing love, filled us with a divine insight into His plan for Amber to be with Him in Heaven. And, in that knowledge and through our tears, we could release her into the arms of Jesus. As we spent the next hour or so in tearful embrace, the nurses notified LifeLink of our desire to donate Amber's organs.

When we met with Cookie from LifeLink, she told us what our options were for organ donation. Due to Amber's cardiac arrest, they would have to run special tests on each of her major organs to determine their transplant viability, but her readings from the ICU reports looked good in that respect. We decided to donate only Amber's major organs and after a brief meeting where all the consent forms were signed, we were told that they would keep Amber in ICU on life support until they took her for the surgery and autopsy.  We were also told that LifeLink would keep us notified of all organs that were transplanted and supply additional information on the recipients as time passed. In making the decision to donate Amber's organs, we, inadvertently, removed the option for Jamie to hold Amber, since keeping her attached to the IVs and life support devices was critical to successful transplantation. Jamie knew this and decided to donate anyway.

When we began to collect our personal belongings and pack up to go home, it was close to 5:00 p.m.. Each of us had spent the past six hours waiting and taking care of various LifeLink details, but when all was said and done, the task of leaving Amber's ICU room was still before us. She was still lying there in bed with her heart beating, breathing via the respirator, and warm to the touch. For all the world, she looked alive, and it hadn't occurred to us just how hard it would be to leave her like that! We'd held her, kissed her, and whispered that we loved her at least a hundred times, and now we had to say goodbye to what appeared to be our living child. As we forcibly extracted ourselves from the room, Jamie burst into sobbing tears, and every nurse in ICU did the same. And, then we left ICU for the last time and drove home to Cartersville and to Amber's empty room.
 

July 7, 2003 10:25 am

Our hearts still ache in sadness, and secret tears still flow,
What it meant to lose you, no one will ever know.
Such a little girl, living grown up dreams;
Shooting for the sky, with a smile and eyes that beam.
Her living an example, her death was a surprise;
Heaven's latest angel, finally gets to fly.
She touched so many lives, she made us see the light
Dreams are only dreams, unless we live them day and night
Her life here may have ended, but her soul will never die
Heaven's latest angel finally gets to fly.
Nothing left to ground her, Spirit ... finally free
The world hers' to discover, "From sea to shining sea"
Yearning for the blue skies, as she waves one last good-bye
Heaven's latest angel, finally gets to fly.

 

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July 4, 2003
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