Somewhere Over the Rainbow (nacedesign.com)
Part 4: When life was forever changed
Caitlin’s stay in the intensive care lasted almost four weeks. During that time, I learned how to read more machines, became close to several nurses and one of the PICU’s attending physicians. The hospital chaplain made frequent visits to see how we were doing.
Caitlin was placed in an isolation room because of her pneumonia and her susceptibility to infections. The isolation room allowed me to stay with her throughout the day, but I was no longer allowed to sleep with her at night. Instead, I slept on vinyl sofas in the parents’ waiting room. Sometimes I would go home in the morning to take a shower and change clothes; other times, I would find a shower and stay at the hospital. More often than not, I would go home for at least an hour and clean a house that no one was living in. While I would be vacuuming, I would weep. Then I would finish up, change clothes, and go back to the hospital.
One of the few times that I did go home to sleep, we were called by the hospital to come back because there was an emergency. I remember driving back to the hospital in silence. I was driving, and I had my emergency flashers on. I suppose that I had wanted to drive so that I could feel in control of something, no matter how insignificant. We went in the back door for staff and were stopped by a security guard who did not know us. He took one look at us and realized what was happening and moved aside. Caitlin had developed an infection around her heart. After that, I rarely left the hospital at night.
I remember arriving back at the PICU one morning, and the night nurse had made Caitlin a bow from paper and had put it in her hair. All of the nurses were very attentive, but usually, it was one of two nurses who cared for Caitlin during the day. They asked for her. The consistency they provided was one of the few things in our lives that was consistent.
I taught as many classes as I was able, but more often than not, I had to have someone fill in for me those last few weeks. I couldn’t bear not to be with Caitlin for more than a few hours, and when I was in the classroom, I was useless, and my students knew it. I had told them at the beginning of the semester that my daughter was very ill and that I would probably be missing some classes. I was admittedly surprised that every student was understanding, that they never complained when I wasn’t there. They were truly a wonderful group of students.
Our friends and family were frequent visitors to keep us company at night. People brought us dinner, played cards, anything to pass the long nights. A few times we spent the night in Paul’s office at the medical school, sleeping on air mattresses. Those times, I would take a shower in the room just off the cadaver room where the medical students practices on bodies that had been donated for research. It was unnerving, to say the least.
When we were left to our own devices, we would walk over to the main hospital and get food from the cafeteria. I mostly remember getting extra large cups of coffee. But each time we went to the cafeteria, I would stop in at the chapel. Paul would wait outside while I made my daily, twice daily, sometimes thrice daily pleas to god to spare my little girl. In all of the times that I was in that chapel, not another soul entered.
Because she was hooked up to more monitors, I could no longer bathe and dress Caitlin in the mornings as I had once done. The only personal effects that I could fit in the room were a small cassette player on which I played Disney tapes like Pinocchio and Cinderella, and lullabies, and the nurses let me put a miniature Kermit the Frog on the end of her bed.
It was a special edition Christmas Kermit Muppet Baby. McDonald’s was selling them that season. Alexis saw Kermit and wanted one for herself. My dad took her and got her Kermit and then Fozzy Bear. Alexis recalls that when her Papa went through the drive through and ordered Fozzy, the woman taking the order could not understand his Filipino accent and kept asking what size french fries he wanted. Finally, Alexis yelled Fozzy Bear. It was a little bit of humor in an otherwise very unfunny situation.
The staff also found a way for me to hold my daughter in spite of the wires that spidered out and around. Depending upon her condition that day, I would hold her for as long as they would let me, rocking her in the blue vinyl rocker that they had put in the corner of the room for me. I would sing softly to her: “When You Wish Upon a Star,” and “Somewhere Over the Rainbow.” Wishful songs more for my comfort than hers, I suppose.
But for me, the most painful reality of those days was that Caitlin had been put in a medical coma so that she wouldn’t fight the respirator. She never opened her eyes and looked at me again after that morning when she was rushed down from her former room. She had the most beautiful brown almond-shaped eyes with long lashes. Some days, it would appear that she was crying, but the nurses assured me that she wasn’t. I never believed them.
While Caitlin was in PICU, I became familiar with the other children who were there, just from catching snatches of conversations. One boy, Hobie, was very ill, and his parents were there as frequently as we were. Hobie was a teenager, and I don’t really remember what he was suffering from. I only remember the night that he died: Halloween.
Most of the nurses were dressed up for Halloween, and Hobie’s nurse was dressed as Raggedy Ann. I remember it as clearly as if it were yesterday. I went home in the late afternoon to get Alexis ready for Trick or Treat. That year, she was going as a princess. She had a crown and a magic womp (her pronunciation) and a beautiful pink and lace dress that her grandmother had made for her. Her father took her around for candy as I handed out candy to other people’s children. Once Alexis went to bed, I went back to the hospital. Hobie died that night.
Hobie’s death really affected me for a number of reasons, but mostly because he and Caitlin seemed to be on parallel paths. He would get a chest tube, and then she would get a chest tube. You see, one of the more heinous aspects of being on a respirator for a long time is that the lungs rebel. Caitlin’s oxygen levels would start to drop; alarms would go off, and the doctors would come in and listen.
The portable x-ray machine would be rolled in, and then after looking at the x-rays, someone would tell me Caitlin had developed a pneumothorax—a collapsed lung that occurs when air leaks from inside the lung to the space between the lung and the chest wall. This meant the insertion of a chest tube to help reinflate the lung. Her oxygen saturation would get better, and everyone would calm down.
They put in chest tubes and then removed them when she seemed to be getting better. The same thing was going on with Hobie. But then, it seemed that they both took a bad turn, and chest tubes kept being inserted. At the most, she had 12 in at once. I joked feebly that she would never want to wear a bikini because of all of the little scars that they were putting on her.
By then, the chances of her getting old enough to wear a bikini were diminishing quickly.
After Hobie died, I began to lose the little hope that I had been clinging to so frenetically. Although I never wanted to admit it, I had to face that Caitlin might not make it out of the PICU. I asked for the minister from my mother-in-law’s church to come to the hospital to baptize Caitlin. It wasn’t that I believed that she could not enter heaven if she weren’t baptized, but it was comforting nonetheless.
On the Sunday after Halloween, she had a very bad day. We all had a bad day. Paul and I decided to go home around dawn to get a few hour’s sleep. Caitlin’s nurse called us at 9 o’clock Monday morning to see when we would be coming back. It was November 7. That had never happened before, a call from the hospital when they knew that we were coming back soon. I knew that it was not good news. When we arrived at the unit, the doctor on call that day took us into his office and told us that the time had come to make a decision. Paul looked at me as if he were completely surprised. I was not.
We asked for a little bit of time. I remember that we walked out of the hospital and walked around the medical complex. It was a beautiful day. Paul asked me what I wanted to do. Wanted. What I wanted was anything but what needed to be done. I told him that I believed that it was time to let her go. As I said the words, I literally felt my heart break. I had never felt so much despair as I did at that moment. Ultimately, he made the decision mine. I hated him for that but never told him.
We went back inside and back into the doctor’s office. We told him what we had decided, but we said that we needed a few hours to call all of the family. We called everyone and told them what was happening. My parents and Paul’s parents and sister arrived at the hospital at around 1 in the afternoon. Everyone filed into the room to say their goodbyes. It had to be done in shifts because of the size of the room.
Then when it was time, they placed Caitlin in my arms, and turned off the respirator. I sang to her. We watched as her breathing slowed and then stopped. It was 2:42 in the afternoon. The monitors had been turned off so that the alarms would not sound. Everyone came into the room one more time, and then we were asked to go out for a few minutes.
When they called us back in, my baby girl was no longer hooked up to any machines. She was lying in the middle of the big hospital bed, and she looked peaceful, or at least, that is how it seemed to me because the machines that were supposed to sustain her were no longer invading her body. I took off the hospital gown and dressed Caitlin for the last time. I put her in a pair of pajamas with little flowers on them. I put on a pair of booties.
Then we took her few belongings and left the hospital for the last time.
End of Part 4.