I do not normally repost complete blogs, but in this case, I thought that I really needed to make an exception. What Memphis Mafia is asking for is such a good cause that I wanted to make you aware of it.
Children’s hospitals are miraculous places. I don’t mean to sound all puppy dogs and kittens. I truly mean the word miraculous. Having spent an inordinate amount of time at The Children’s Hospital of the King’s Daughters with my daughter Caitlin, and then later, with my youngest son Brett, I have an extensive knowledge of what goes on in a hospital dedicated to serving the needs of only children.
It takes incredible strength to work on some of the wards. And I have found the administrators to be a particularly dedicated group of people. In fact, when I was in graduate school, I had a short stint with CHKD working on a national children’s hospital conference.
All of that aside, I hope that you will click on the link and cast your vote. Having a gameroom makeover is no small thing in a hospital filled with children of all ages, many of whom are bored for hours on end. If you have ever been in hospital, you know exactly what I’m talking about: the interminably long hours of absolutely nothing to do. A hospital gameroom is the place to be if you are a child who is mobile.
The people who read this blog regularly are a wonderful group of people. I know that I can count on you to participate.
September 30, 2009 · So, I’ve never really talked a lot about my life on this blog, but today I’m going to break that rule. I work for Le Bonheur Children’s Medical Center in Memphis, Tennessee. Which if you’ve been seeing my tweets (conveniently located just to the side of this post), you probably shouldn’t be surprised. It is a fantastic place that helps lots of patients and families. If you want to know more about it, I really recommend clicking on the link for it. I’m am breaking my silence to ask for help.
TheChildren’s Miracle Networkand Microsoft Xbox are hosting a contest to give away three gameroom makeovers for Children’s Miracle Network hospitals, which Le Bonheur Children’s is one. The winning organizations get a completely redone gameroom, complete with $10,000 of new equipment. The contest is fairly simple, people register and can vote for the hospital of their choice. Each voter has 10 votes they can cast daily, and can vote everyday between now and October 16.
When I started looking at this, Le Bonheur Children’s was in 58th place, but has moved up to 17th (and will probably end today at 16th). To be competitive, we need to recruit 3,000 new voters, which would translate into 30,000 daily votes. So, this is where I turn to you, dear reader, to ask for help. If you are willing to help, follow this link tohttp://xbox.childrensmiraclenetwork.org/and register to vote. The zip code (which is the easiest way to find the hospital) for Le Bonheur is 38103. Vote daily for the contest, and tell your friends, family, or however about it.
I don’t want to sound cliche, but this will make a major difference in the experience of patients and families receiving care. The hospital needs places like this to give families somewhere to go and unwind. Children need place to go, play, and just be kids (and not “sick” kids). It takes about five minutes to register and vote, and then 2 minutes a day after that. Thanks for helping us out!
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.
Note: this entry was originally posted in January. I am reposting parts 1-3 since so much time has passed between those entries and part 4, which I will post tomorrow.
Part 3: I Dream of Oranges
It’s funny, but the time between the baby showers in February and Alexis’s fourth birthday in July just seemed to pass so quickly. In June, we had Caitlin’s three month portrait made. She was wearing a tiny rosebud print dress with pink trim on the sleeves and neckline. I remember that the sleeves were just a bit tight on her chubby arms. She had this extra crease in her arms like a lot of chubby babies do. I used to love to play with that crease in her arms.
On July 7, we had Alexis’s birthday party. I remember it was the birthday of Barbies. She had asked for several Barbie items, and the family pitched in and bought them. I remember taking one picture of the Ken doll sitting in a lawn chair, flying a kite. I told Alexis that Ken needed to go find a job and stop relying on Barbie to support him. Then we all started putting Ken in these ridiculous poses and taking pictures of him. It was pretty hilarious. Caitlin was sitting in her little blue chair on the floor, taking all of this in: the bright color of the balloons, the noise, the packages. I took a picture of her sitting in her chair. Everything seemed so utterly normal.
Pat and Winn weren’t at that party. I really don’t remember why. We didn’t see a lot of them that summer. Or maybe we did. A lot of that summer has become a blank to me. The last invitation I remember that summer were friends of Paul’s inviting us to go sailing, but we had to turn them down because Caitlin had some kind of virus and was throwing up. She was throwing up so much that we ended up taking her to the emergency room on Saturday. We saw a resident. He said that it was a virus and gave us pedialyte and sent us home.
On Monday, August 23, I was to begin my new job teaching English at Old Dominion University. It was a pretty exciting time for all of us. We had our two little girls. I had the job of my dreams. Paul was doing well at his job at the medical school. It seemed that life our lives were charmed.
That Tuesday was when our lives began to disintegrate, and they never recovered. When I went back to work, my mom and Paul’s mom were going to share in the responsibility of watching the girls. I was in my first faculty meeting when I was called out for a phone call from my mother. I was really perturbed that she would call me at work. I picked up the phone and it was the pediatrician’s office, one of the nurses who I knew very well. She was speaking calmly, too calmly. She said that she was going to put my mother on the phone.
I remember driving to the Children’s Hospital of the King’s Daughters, which was just down the road. I remember meeting Paul; the medical school was across the street from the hospital. I remember a CT scan showed blockage. I remember falling down a wall. I remember calling Kathleen in northern Virginia at work and saying the words, “Caitlin has a brain tumor.”
An operation to remove the tumor. Seven hours long. Pat was there with fresh oranges, talking to me. The tumor was the size of a small orange. Later, I would write a poem comparing the ependymoma to an orange. I remember nothing Pat said to me. Too many people were there. One of the women from the medical school gave me a rosary; it was red, like garnets. I just remember noise. I just remember wanting all of them to go away.
After recovery in the PICU, Caitlin was sent to the Progressive Care Unit. After a few days, she had another operation to install tubing which was going to be used for her medicines: chemotherapy, whatever she needed.
I was trained on how to flush and clean the lines because Caitlin was going to be allowed to go home. The plan was that she would come in for overnight stays when she needed chemo. We were going home on Labor Day weekend. In the meantime, ODU had given me the option of giving up my classes for the semester or taking a reduced load. I took a reduced load down to two classes. I was actually still hopeful that everything was going to be all right. After all, Pat had survived.
Caitlin stayed home for six days. I came home from school to find my mother completely distraught. The back of Caitlin’s head, which had been shaved for the operation, was swollen, the incision puffy. I called the neurologist, and he said to take her to the ER at the hospital. She was readmitted to the PCU with a staff infection, that dreaded infection that hospitals give their patients, one of the oxymorons of a sterile environment. The neurologists had to drain the fluid from the incision every morning.
They put Caitlin in one of the two private rooms in the unit, which had a pull-out bed because the nurses knew that I would be sleeping at the hospital whether or not I had a bed. I began to bring in personal things: a teddy bear, dresses. I didn’t want her to wear a hospital gown. The nurses, who already knew me from our previous stay, indulged my every whim.
Each morning, I gave Caitlin a bath, and I put her in one of the beautiful dresses that Pat had given us. I fixed her hair, at least, the hair that she still had. We took pictures of her. From the front, you couldn’t tell that they had shaved her hair in the back. She still looked beautiful with all of that dark hair. Each day a different dress, a different bow. I brought in more and more personal items. I turned the sterile hospital room into her bedroom. No one stopped me. The hospital closet held so many dresses, her red dress, green dress, blue dress. I brought in her booties and lace socks.
After her first round of chemo, everything changed. Her body became so weak, and she threw up repeatedly, non-stop. The nurses paged the neurologists. One of the younger men in the group showed up and said within range of my hearing, “She’s throwing up. That’s what they do when they have chemo. I don’t know what you expect me to do.” The next day I changed her primary care from the neurologists to the oncologists and had a note put in her chart that that particular doctor was never to touch Caitlin again. The oncologists gave Caitlin something for her vomiting and took blood samples every few hours to check her white cell count, which wasn’t good.
Her main oncologist, who happened to be a friend of mine, called me from out of town to give me the bad news. He told me that he had never seen a count that low from a chemo treatment. They were going to suspend her chemo for now and rethink how to treat her cancer.
That night, her monitor alarms kept going off. I had a new nurse who did not know Caitlin’s case. She would come in, look at the machine, and look at Caitlin, and say, “Well, she’s breathing just fine. I don’t know why the monitor is going off. There must be something wrong with the machine.” I asked her if she was sure. She looked at me as if I were just one of those pesky mothers. The other nurses had already learned to take my questions seriously as by then I knew how to reset all of the monitors, knew how to read results, and knew my daughter’s body signs instinctively.
In the morning, I gave Caitlin her bath, and I was rocking her when I happened to notice that her nails were blue. I knew that meant that she wasn’t getting enough oxygen. I had another new nurse, and she was nowhere to be found. I waited another half an hour. I had asked for a chest x-ray the day before, but no one had followed through, and between all of the chaos, I had forgotten about it. Now, I was kicking myself for not being more assertive.
I went out to the nurse’s station. They took one look at me and asked me what was wrong. I told them that Caitlin’s nails were blue. Within two minutes respiratory therapy was in the room and so was a portable x-ray machine. Caitlin had pneumonia, pneumocystic to be precise. The kind of pneumonia that AIDS patients get because their immune systems are so depressed.
One of the nurses who knew me the best told me and asked me about the pneumonia, and asked me to pack up all of Caitlin’s belongings. They were transferring Caitlin to PICU. I called Paul at the medical school. He and a friend packed up all of her things and met me in the waiting room for PICU. We couldn’t go in right away. When we were allowed in, Caitlin was in a hospital gown, and she was on a respirator.