Within the span of twenty-four hours, a world changes, expectations alter, and life creates new meaning. It was just such a time frame that swirled by as our six month old daughter transformed from infant to patient, and we journeyed from our first celebration of Father’s Day to grief stricken parents. The realization that we may lose the child we had so longed for swept over our consciousness. Would she live through the night was our single deliberation, our sole prayer. It became our only vision, as the remainder of life’s particles blended into the darkness of the tunnel before us.
Paralyzed with fear, guilt, helplessness, grief, and hope, we were no longer able to navigate the waters of life beyond the confines of the Pediatric Intensive Care Unit. The darkness of our tunnel had no meaning beyond reaching the dim flicker of light at the end. With our parental role relinquished to a medical team and our daughter placed into a drug-induced coma, we were relegated with becoming little more than bystanders. We learned to depend on this environment for our daughter’s very existence, and once liberated from her hospital domicile, our family was left with little support to help us create meaning from chaos.
Our daughter, Kristina, had contracted viral myocarditis, which infected her heart and impacted all her major organs. Shortly after her admittance to the pediatric intensive care unit (PICU), she experienced a cardiac arrest. Fortunately the medical team was able to revive Kristina, however we were told several days later that we should prepare for the worst, as their medical expertise was "backed up against the wall". Just as suddenly as she had become ill, she began to recover. The medical team in charge of her care proclaimed that it was nothing short of a miracle. In all, she spent approximately two months in the PICU, followed by months of physical therapy. Although elated with her recovery, we spent years thereafter searching for our emotional and financial recovery.
Many parents have found the ability to regain equilibrium following such an experience a very daunting task. Over 80% of all Americans have been affected by a critical illness, and because it often occurs without warning, there is little time for family members to prepare for this experience. Stressors produced by a critical illness vary in intensity and duration, but certainly have the potential to create a heavy burden for families. Research clearly indicates that the implications for families consumed by stressors of such magnitude frequently result in negative outcomes including anxiety, confusion, anger, depression, Post Traumatic Stress Disorder (PTSD) and divorce. One study noted that this event has been associated with long term negative outcomes as many as ten years later, especially for those children younger than 6 years of age, who are subjected to multiple intrusive procedures, and who experience lengthy (more than one week’s duration) hospitalizations. One of the central factors that appear to sustain families under such circumstances is a support network, as was the case with my family. For that reason, Krissy’s Kuddle was conceived to provide support to families that extend beyond the confines of the hospital.
Malissa Withers graduated from Springfield College, Tampa, FL, in 2000, with a Masters of Science in Community Psychology. She has spent the past 25 years working with children and families where she held counseling and management positions with several agencies including Successful Community Living in Springfield, Massachusetts, YMCA and Milestone Youth Home in Naples, Florida, and The Children’s Home, Inc. and Mercy House in Tampa Florida. She has also been self-employed as a Family Child Care Provider.
Bill Withers graduated from Springfield College, Tampa, FL, in 2001, with a Masters of Science in Community Psychology. He has spent the past 20 years in the Tampa Bay Area working with children and families where he held counseling and management positions with McDonald Training Center, Sunland Training Center, The Children’s Home, Inc., Tampa General Rehabilitation Center, and The Harbor Behavioral Institute.
My perceptions as a father were captured in a journal begun shortly following Kristina’s admission to the PICU. Through the following passages you may gain a greater insight into the depths of our despair during our daughters illness.
It was an unusually muggy Saturday afternoon. My daughter, Kristina, had just returned from a shopping spree with her mother, nanny, and grandmother. Krissy was promptly given her afternoon bottle of formula. She immediately threw up the entire bottle. My first reaction was to chuckle, however that would soon turn into such anxiety that it would keep me sleepless for days. Although we didn’t realize it at the time, our lives were about to be turned upside down and put on the roller coaster ride of our lives.
Krissy began to get sick at 5pm. She was unable to retain any food after this time. Her physician was contacted about 7pm, and advised to feed her Pedialyte every 15-20 minutes, as she appeared to have flu-like symptoms. Malissa and I stayed up with her for the entire evening, where Krissy remained restless and unable to sleep in her usual fashion. We brought her into our bedroom where we did our best to comfort her through the evening.
Krissy began to accept fluids. She was willing to drink more than she could keep down, which was about ½ an ounce at a time. She slept frequently during the day. At about 3pm her conditions appeared to deteriorate, with her skin color becoming greyer, and her affect becoming more lethargic. Her groans clearly indicated her discomfort. At 4:30pm, her physician was contacted and he advised to take her to the Emergency Room. We got her to St. Joseph Hospital about 5pm. She proceeded through the typical triage when Malissa finally pleaded that I get immediate care for Krissy. I looked at Krissy and held her hand, only to find it lifeless. At that point, I burst into the Pediatric Emergency Room and demanded the critical treatment for her that we felt she needed. In all, it took less than 15 minutes to proceed from the initial registration to being checked by the ER Pediatrician. By this time, Krissy had become limp and near lifeless. Many questions were asked of us (such as "did you realize she was sick?") as the pace of her treatment accelerated to a near frantic pace. They encountered numerous problems, the most pressing being to establish an IV, as her tiny veins had collapsed. I was asked to leave to complete her initial medical file. Upon my return, Krissy was still being treated at a furious rate. I asked the doctor if she was going to make it. He responded by saying that "she is extremely sick and in very critical condition". I walked out to the hall, sat down and sobbed. Malissa came by to provide comfort, at which time we were asked if we would like a private room.
Following her transfer to the pediatric intensive care unit, we were told that it would take about an hour to prepare her. The hour turned into four, at which time I went to the PICU and inquired about seeing her. We were finally allowed to see Krissy around 11:30pm. She was connected to a maze of IV’s, respirator, and heart, lung, and blood pressure monitors. It became difficult to find ways to lean over far enough to stroke her hair or kiss her cheeks. Her condition continued to be critical. We were provided a Family Room (B) within a few yards of the PICU around 2am. This would become our home for the next week.
Krissy’s upper lobe of her right lung has partially collapsed and her lungs contain fluid. She began receiving treatments to address this. The bright side was that she was still alive and many of her signs were stable and increasing. Life has become too difficult to elaborate on the day.
Krissy’s vital signs continued to strengthen. As a result, it was determined to attempt weaning her from the Dopamine. This began about 8pm. She appeared to respond favorably and our family rejoiced by playing games that provided relieving laughter. I informed the nurses that I would come by to see Krissy again around 11pm. Minutes before that, there was a knock on the door. The messenger informed us that the physician would be down shortly to speak with us. I suggested that we go down to the PICU as an alternative. Upon arrival, the physician informed us that Krissy had a cardiac arrest at 10pm. Her heart stopped for 5 minutes, however they were able to revive her. At that time she returned to stable condition, and her Dopamine was increased to its original levels. It took several hours before we were able to go to sleep, finally dozing off around 4am.
The news today wasn’t what we expected, or wanted to hear. We were requested to attend a meeting to be held tomorrow morning. Feeling anxious about this, we immediately went to see Dr. Blanco at her office. She explained that the doctors likely wanted to tell us to prepare for the worst. We began to discuss heart transplants. We were told that Krissy wasn’t stable enough to undergo such a procedure at this time, however if she became more stable, we were advised of several locations where this could take place. Krissy still looks ok, but concerns are growing for any recovery from her medications. Life in general is very difficult at best right now. I continue to pray for a single miracle...just bring our beautiful angel back to us.
Today has been perhaps the single most difficult day of my life. It began with the scheduled meeting with the physicians assigned to Krissy. They informed us of her current condition and that they had done all they could. At this point, her lungs have become hardened, like a sponge that had dried out after putting soap and water on it. As a result, her heart has to work harder and it can’t. They have put days left to her young life. The positives are that Krissy has partially opened her eyes to see us, and is squeezing our fingers more and more with her tiny hands. We walked away, my soul near empty, my spirit drained.
The phone rang at 9:10am...and it was Dr. Blanco. We were all still asleep from the trauma of Thursday. She stated that she knew this had been a roller coaster ride for us, but that Krissy was showing signs of progress. Her blood/gas was up to 200%, improved color in her skin and advised that we should see her ASAP. This was not what we expected, but certainly what we had prayed so hard to hear. We rushed to her bedside to find this all to be true, that it wasn’t a dream. Had the Miracle that we had prayed for finally begun? Pamela, her nurse today, said that an echocardiogram was completed earlier and it appeared to show strengthening of her heart. Could this be happening? She continued with her observations, noting that Krissy was teething on the tube they were incubating her with. We are blessed. My family went to Mass, only to be greeted by the song Amazing Grace.
