People frequently asked me, “Did you know there was something wrong with Jet when you were pregnant?” I answer “No.” I knew there was something wrong with me.
My pregnancy was a surprise though no accident. I had stopped taking birth control pills, wanting to eliminate any medications that might be contributing to my irritability and sadness; but a month later, I was pregnant and irritable as hell. I kissed my anti-depressant and mood stabilizer goodbye (they weren’t helping me, anyway) and settled in for the discomforts and joys of pregnancy. I cried. I screamed. I didn’t want to be pregnant and I kept feeling more and more anxious. Agitated. Tired. Grumpy. So ungrateful was I for the child growing inside me that I remember thinking to myself, “God is going to punish me. I’m going to end up taking care of this child for the rest of my life.” I complained. I bitched. I knew.
Ultrasounds showed nothing but a growing baby boy whose penis was a source of great delight to my husband and the doctor. Everyone kept pointing at it. OK, he’s got one, what else? No signs of heart trouble. No signs of trouble. No signs.
Jet was conceived on his father’s 34th birthday, February 8th, 2001, in the Hotel Del Coronado in San Diego. The reason I am so certain of Jet’s conception is that sex was rare between my husband and me at that time. The trip to Coronado was to be a little break from our work, our 2 ½ year-old daughter Blaze, and my production of a benefit performance of Eve Ensler’s The Vagina Monologues. I had been inspired to gather my closest friends and some new acquaintances to read this phenomenal text to benefit the women of Afghanistan and a local organization protecting women and children from domestic violence. The performance was to be on February 22nd, and I was performing “My Angry Vagina,” probably the funniest bit in the show. It begins, “My vagina’s angry. It is. It’s pissed off. My vagina is angry and it wants to talk. It wants to talk to you. It wants to talk about all this shit. I mean what are they trying to do, torture my poor-ass gentle-loving vagina? Inventing all this shit . . . ” V-Day (as the international movement to stop violence against women and children is called) was the largest and most engrossing project I had ever taken on, and I was full of energy, creativity, emotion. I had stopped taking the pill, believing it to be the ultimate cause of my chronic mood disorder and inability to be as thin as I desired. (Though I failed to reason that my depression began when I was ten, and I had started taking the pill when I was sixteen). Ron and I hadn’t made love in weeks–my concentration was so outward bound. I felt like I was riding the rim of the world, and there was little room “down there” for him. I later wondered if God (like the man who scribbled a threatening note dropped in my work mailbox on performance day) didn’t like women talking about their vaginas. I had always thought women’s subjugation in the Scriptures was man’s doing, but now I questioned. Were I and my friend Megan who co-produced and performed in the show with me punished because we sinned? Could it be coincidence that our babies conceived during the production suffered so?
Did Jet’s trouble begin with Vday? At that time I didn’t imagine a child of mine might have birth defects, heart disease, a syndrome. Yet, once I was pregnant, I was so oblivious to the gift of giving life, so vain about my weight (despite eating as though an extra 60 pounds was part of pregnancy)—so enraged and engorged and in pain was I that in my mind, in my screaming fits of outrage, I knew that God was going to remand my ingratitude with a child dependent on me for the rest of my life. A disabled child.
It was summertime in Palm Springs: no time to be pregnant. Dehydration causes contractions, and the heat causes madness, and the combination does not make for a pleasant experience of childbearing. Ironically, during my pregnancy, I refused to take the anti-depressants and mood stabilizer that I’d been on for years, fearing that it might cause birth defects in my baby. Instead, I was an irritable, intensely pissed-off, tightened-too-tight wire that people kept bouncing on. I wouldn’t break, I just kept bowing lower and lower to the ground before snapping back into my tightly-taut place. My pain was bearable. If I knew then that my stress could be causing my son’s suffering, I would have taken the medicine, taken more vacations, taken the year off teaching, taken the fact that I was baking a baby a bit more seriously. After eating eggplant to bring on the birth three weeks early–an idea gleaned from “Oprah” via my daughter’s preschool director–on my second trip to the hospital that summer, I was offered the option of having my C-section a week earlier than scheduled. (My daughter had been born by emergency C-section and I wanted what was familiar, not wanting to risk sexual incompatibility with my husband or injury to my blessed vagina). If my due date was accurately calculated, Jet was delivered at 36 weeks gestation. So now I have answered one of the most commonly-asked questions of the many nurses and medical professionals we meet: Was he a premie?
No, he was not a premie, and neither was Megan’s daughter Ellie, who was born on Jet’s scheduled delivery date; he, born on her due date. He was delivered. Beautiful, but with a tiny right ear, curled over like a little fist grasping life like a flower. So? Beautiful. My husband was afraid. The video camera lowered in his hand the moment he heard the nurse mention the baby’s little ear. What? So? Beautiful. I loved him the moment he was out of me. Jet. Later, I held him close to me in bed, urging him to nurse, losing patience since my daughter had been an expert from the start. I humbled myself to a kind nurse who helped me give Jet a good hold on my breast. We slept—me sitting up in bed holding him. The pain from my delivery forgotten in my bliss. My baby. I loved him the moment he was out of me.
The doctor noticed his ear only enough to suggest plastic surgery. The nurse noticed his face crinkled more on one side than the other, but the doctor thought it unimportant “as long as it doesn’t interfere with his feeding.” When I went to see my own doctor with Jet, I said “He has some problems.” She said, “I can see that,” throwing a sideways glance at his ear. “Things like that don’t come alone,” she said, snapping her fingers at Jet’s face from side to side. “See, he’s not responding,” she said, as Jet stared lovingly at me, and I cuddled him close, wondering how she could know so much and so little at the same time. She knew that a malformed ear meant other malformations. Why didn’t anyone else know? The technician giving a hearing screen said after thirty minutes, “He looks like he’s sleeping, but his mind is so active. I can’t test him. I’ll come back another time. (I remembered these words later–when his lungs had collapsed and he was medically paralyzed and sedated). What was he thinking?
Healthy Baby
3/03
People assume a baby is healthy How
Even a defect is presumed to be unimportant
If baby looks normal then
Normal He is
To them
As long as he’s breathing
Home in two days with jaundice the only thing that earned him any extra medical attention. Out in the sun, growing tan to be less yellow, he was like any baby. At his bris (circumcision ceremony), we gave him the Hebrew name Evon, for stone. (Later I would tell a famous heart transplant doctor from Loma Linda this name when he told me Jet had “nine lives,” that he was a rock.) When the mohel and my husband, brother, and father went into the kitchen for the circumcision, my sister the doctor held my arm and said, “You can stay here,” as if giving me permission. “Are you kidding?,” I said. “I’m not missing a procedure done to my son.” As long as I could not, I would not. Jet’s bris would be the last time we’d hear his cry for two years.
When Jet was about 3 weeks old, his cry became inaudible. No sound would come out when he screamed. My husband shouted “He’s at Level 3…Level 3!” which meant that Jet was bright red with a wide open mouth and crinkled face the only signs that he was crying hysterically. We couldn’t leave him alone for more than a few minutes at a time—quite difficult since we had another active child—a daughter, Blaze—who at the time was not quite three. I desperately began trying to find out what was wrong with our son’s breathing as he began to “gag,” we called it, and “choke” we would say, in the mornings when he got up. I used a nasal aspirator to try to suck mucus from his throat, but it wouldn’t help. No one could help. I’d drive him to the doctor during one of these episodes, but by the time we’d arrive, he’d be asleep. (I’d later realize that sitting in an upright position—in his car seat—was most comfortable for him because it helps to keep down reflux). Doctors didn’t know what was wrong with him and they didn’t seem to care. He looked ok to them. He was beautiful and robust, but we learned from MRIs, a cardiologist, and neurologist that he had two holes in his heart and a condition called Goldenhar Syndrome. The pictures of the children with this syndrome were missing eyelids, even halves of their faces, and it was hard to imagine that Jet could be as ill as that. What we didn’t know was that, although his outward appearance suggested little about his condition, the inward manifestation was much worse. A Loma Linda heart doctor told me that they didn’t want to fix his heart until he was older, bigger—that the holes in his heart were in the middle and back, and that his heart was so small, they’d have trouble reaching the holes. She told me that they would be performing not one heart surgery but two—yet not until he started to “turn blue.” I was shocked. We had been so hopeful that nothing was wrong with Jet but his ear. Turn blue? She didn’t tell me she meant his level of oxygenation, rather than his coloring would be blue, but essentially the two go hand-in-hand. They would start with a pulmonary artery band—putting a rubber band-like thing around his pulmonary artery to stop the flow of blood to the lungs, and a year or so later, once he was bigger and not getting enough oxygen (i.e. “blue’), they would remove the band and fix the holes: patent ductus arteriosis (PDA) and ventricular septal defect (VSD). I was so angry and appalled, I could barely speak. I hung up the phone.
Despite frantic calls to every doctor I knew, when Jet was three months old, on a bright sunny morning of January 24th, 2003, in Palm Springs, California, he stopped breathing in my arms. One moment I was changing his diaper and in the next, his eyes rolled back in his head then closed and he turned gray. I ran with him through my bedroom, through the hallway, holding him out in front of me, shouting “Call 911!” but without waiting my family and I jumped into the front seat of the car and began racing down our street. At that instant I realized I needed to breathe into his mouth. He was lying in my lap, and I blew into his mouth, stopped, blew again, and I saw him come to. We arrived at the emergency room in five minutes and were ushered quickly into an examination area. I was barefoot and braless and I saw them put oxygen on his face—finally what he needed.
We had been to see the so-called “airway specialist” at Loma Linda a week earlier. We showed him video of one of Jet’s choking spells. Without warning me that there would be blood, he performed a soft laryngoscopy–ramming a long, flexible tube through Jet’s nose down to his larynx. Jet’s nose began to drip blood. “Tracheal malacia,” the doctor declared. “A floppiness of the airway. He’ll outgrow it by the time he’s about eighteen months.” “Can we get oxygen for him?” I asked. “Well, yes,” he replied. But he’ll have to be tested for reflux first, with a PH probe.” “How long before we can get that done?” I asked. “It will take months unless you check into the hospital. But I have to warn you, this is a bad time for germs.” Had I really considered how serious germs can be for a baby, I would have listened and perhaps not taken Jet to the hospital till Spring. I didn’t listen. (Yet a nurse would later tell me if Jet hadn’t gotten sick at that time, he might have died without any explanation). I didn’t think that my baby could get sicker in a hospital. (How naïve!). All I wanted was for my son to be able to breathe.
So we checked into Loma Linda hospital, as our HMO dictated. I was there overnight with Jet, who had to endure having a new tube jammed all the way through his nose, down his esophagus, and into his stomach. The thought of this was bad enough, but what frightened me most was the color Jet became when he cried, and the fact that without noise, no amount of tears seemed able to relieve his discomfort. The PH probe showed that Jet had severe reflux (though an upper GI x-ray had shown no signs of it—who’s to blame for that?). We left the hospital the next day, but without treatment.
A week later, and there we were in the emergency room of our local hospital, which was unable to treat Jet. We waited for ten hours for Jet to be transported to Loma Linda. When we arrived we saw Jet on a stretcher go into the emergency entrance, and that was the last we saw of him for many hours. We went up to the cardiac ICU to which he’d been admitted. No one came to speak to us. We stood in the hallway. Prominent on the wall was a Norman Rockwell-like print of masked and robed surgeons standing around an operating table, with an iconic Jesus Christ, draping his arms across their shoulders and looking on. As a Jew, I felt bizarre and oddly struck by the painting. What did it mean for my Jewish boy? Would he get the care he needed from these doctors? We entered a small consultation room and waited, crying, whispering. Finally, a doctor came to us in the hallway. “Jet has RSV,” he said, “Respiratory Synctial Virus,” an illness I’d later learn can look like an ordinary cold in small children, but which can kill infants. They were going to have to intubate Jet, he said, put a tube down his airway and put him on a ventilator that would assist his breathing. Could we watch? No. He’d let us know when they were done.
We waited– for hours it seemed. Finally, a nurse came to tell us that we could see Jet. The automatic double doors–that I would come to know so well–opened and we entered a long hallway, with wall-sized glass closed-curtained windows on one side, half-walled desks on another. We walked the length of the area and came to the last room on the left, and in the bed, amidst five or six white-coated medical staff was my baby. I could barely see him—they didn’t let me close to him. My focus was had to be on that machine. The red numbers were blipping. What did they mean? My husband Ron and a nurse had a little to-do over our baby bag, and we were told that nothing and no one could stay in the room with him. We had to leave.
We fumbled our way back to the consultation room that had been our refuge since we arrived. We pulled some seat cushions off the small couch in the room and lay down in the dark to sleep. We were both sobbing. “How can I pray?” I remember thinking. If there were anyone to pray to, this wouldn’t have happened to my baby. I don’t remember much of what happened for the next few days, except that we stayed in a hotel until we were offered a room at the Ronald McDonald house, across the street from the hospital.
To call the Ronald McDonald house an answer to prayers would not be accurate, but to call it a blessing is not saying enough. There’s nothing the family of a critically ill child needs more than to be with their child, and I wanted nothing else. The Ronald McDonald House in Loma Linda is a hotel-like place with a communal kitchen, playground, and common areas, where families of critically ill children can stay for $5 a day close to the hospital. The people who worked there were warm and kind. As days passed, the director of the RMDH asked if, since we had a small child with us, we might like to stay in a small home that they had a couple of blocks away. The cost was a little more–$15 a day, but we might be more comfortable there. We checked it out—a two-bedroom house with a little kitchen, den, and bathroom. We gratefully accepted. “The little house” we would come to call it was in front of a duplex also owned by the RMDH, and into it awhile later arrived the mother of Dylan Sellers, the 4-month-old who was finally receiving a heart transplant after his father left for Iraq. There was considerable controversy over the fact that the father had chosen to go to Iraq while his son was awaiting a transplant—the baby essentially waiting for death or new life while the father went to pursue death. News reporters came and I left, each day I wanted nothing other than to be in my son’s room, watching him, waiting for something to change. He was paralyzed through medication to keep him from fighting to breathe against the stream of the ventilator, so he was virtually comatose. Every night we would wake to call the hospital, to ask if Jet was alright; and every day I would question the doctors, who told me nothing. Jet wasn’t getting any better. They had said it would take ten days, and it had been ten days and Jet’s lungs were still full of fluid.
Walking to the hospital one night a poem came to me.
God, My Son
4/18/03
To Jet, 6 months old
All I can do is watch
My Son
and hope
that he will keep on
Letting me love him
Letting me see him
Without letting go
My sister-in-law, Divine, who’s a respiratory specialist asked me, “How long will they keep him like that?” “I don’t know,” I said, and there was an awakening inside me. I could ask questions! That’s what I could do! That day I started asking the nurses, “What do those numbers mean?” and I began to understand the ventilator, what it was doing for him, and what little he was doing to breathe. The nurses were fairly kind, fairly forthcoming with answers, and I trusted them enough to take my eyes off them for a moment or two. On one nurse’s watch (a heavy-set, freckled, auburn-haired nurse)—Laurie was her name—Jet kept “de-satting” (meaning his blood was desaturated with oxygen). All of us would like our blood to be 100% oxygenated, or at least in the 90s, but–on her watch–Jet always seemed to de-sat. What was she doing wrong? I realized that every time she did chest percussions—a process of using a small curved rubber cup-like apparatus to pound on the patient’s chest and back and loosen mucus—he was desatting. I asked the doctor, “Can she stop doing that, please?” On the phone my sister explained that without doing that, a patient could actually drown in their own mucus. I stopped complaining, but in the back of my mind was a nagging doubt. Each day I would spend in the hospital, drilling the nurses, watching Jet for change.
I don’t remember how many more days passed before the Loma Linda laryngoscopy-giving “airway specialist” we had seen made it to Jet’s room. All I remember him doing is telling me Jet might need a tracheostomy, shaking his head, and leaving. I never saw him again. (My sister comforted me by telling me that her friend had needed a tracheostomy as a child, and was now just fine). I remember all of the critical care doctors vividly, and the best one, Dr. Abdallah, warned me that Jet might need to be put onto a machine he called “ECMO”, which stood for “Extra-Corporeal Membrane Oxygenation”—a bi-pass machine which could do the job of the heart, lungs, or both. I scoffed at both doctors, unable to accept their reality.
Nights were sleepless as we waited for phone calls, called in for updates: still disallowed to sleep there. One night I got a call about 4:30 am from a Dr. Abraha that they were going to try Jet on an oscillating ventilator (coincidentally called a “jet” ventilator). This pushes air in quickly and forcefully. Abraha said he would call me back. I waited, agitated, lying in bed next to my husband, Ron. About 45 minutes later we got the call: the jet vent wasn’t working. Jet was in desperate condition. We decided that Ron would drive Blaze back to Palm Springs to stay with his parents the next morning. I got to the hospital and there were some new doctors in the room. Dr. Abdallah explained to me that now was the time to put Jet on the ECMO machine; and that otherwise, he would die. A new doctor, Dr. Demming, explained the risks to me (hemorrhaging and brain damage were big ones—especially after more than 28 days on the machine. They couldn’t—or wouldn’t—tell me how long Jet would be on the machine). He also told me the results of Jet’s brain MRI: Jet had a tiny carotid artery on the right side—barely existent, so since the ECMO cannula needed to be inserted into the carotid, they would only have one shot at surgically connecting Jet to ECMO. I called a distant friend of the family, a cardiologist, and he told me he couldn’t say what I should do. I called my cousin, a critical care doctor—my dad’s contemporary—who said, “If the doctors say do it, do it, Danielle.” (This would be the last time I’d take that advice). I called Ron, and as calmly as I could, told him that we were facing either this machine or death. We chose the machine.
Moving to ECMO meant another floor, a corner room in the neonatal unit, and Jet’s first surgery: to insert the tubes which would connect him to the machine. I remember waiting in a hallway with my parents and greeting a stellar surgeon who said that the surgery occurred with no difficulty. Later we would meet ECMO–the huge machine that looked like a computer with thick solid red tubes, pushing blood into Jet’s carotid artery—the back of his neck. It took one nurse to watch Jet and one nurse to watch the machine. This was a whole new set of numbers and machinations for me to figure out, but when I asked the nurse what the numbers meant, she said, “Just concentrate on your son.” I looked at him. The blood pumping through the machine and then his body, his enlarged heart beating the only motion of his chest. The nurses telling us he could feel us, smell us, hear us our only reminder that our pale, lifeless-looking baby’s mind and soul were alive. “Treasure this moment,” they said. I laid my hand on his skin, cherished his physical self, filled myself with the look of him.
Jet being on ECMO meant that the doctors finally performed a bronchoscopy. This involves inserting a miniscule-in-diameter, long tube with a light and camera on the end of it into the throat, down the trachea, into the lungs. For some reason, for once, the staff let us be present for this procedure. We all looked at the screen to see what the doctor was seeing. He was having trouble inserting the bronchoscope into Jet’s trachea. He tried a smaller tube, then a smaller. Then finally, the smallest. “I keep running up against something,” he said. I couldn’t really tell what I was looking at: the scope showed images of what looked like a long white tunnel through a dark red cave.
What this doctor finally realized—among all of the doctors who realized nothing–was that Jet’s trachea—his windpipe, as my mom used to call it–his airway–was teeny tiny. This was his airway: the “A” of the ABCs of CPR (airway, breathing, circulation); probably the most important structure in the body. By teeny tiny I mean about the size of the part of a pen you click with your thumb to raise the point. Long-segment tracheal stenosis was the medical term for it. The cartilage in his trachea was o-shaped instead of u-shaped and grew narrower as it went down, stenoting to its tiniest right before the bronchi—the part of the trachea that branches off into the lungs. This was no small discovery. Something had to be done and quickly. We learned that a baby girl had just died of the condition a week or so earlier, before they could operate to save her. The doctors needed a day to research, and by coincidence consulted a doctor in my hometown of Indianapolis to discover what would be the best option for surgery. They chose pericardial patch tracheoplasty, which means bisecting the trachea lengthwise and patching it with a piece of pericardial tissue (that sac of extra tissue around the heart), then waiting (months? years?) till the cartilage grows around the soft, flimsy patch and firms up the airway so that the patient can breathe without the airway collapsing. A tracheostomy would probably be needed to stint open Jet’s airway; there was no argument from me there. Anything to fix my baby.
The next day was surgery day and I remember it was raining. My parents were with me and we waited in the hallway to find out that six-hour surgery had been a success. When I went through those ominous double doors on this day, I turned into the first room on the left to see my baby boy—sitting up in bed, rosy red for the first time in weeks—still under sedation, and still on a breathing machine, but looking well…well. He looked in fact like a little man sitting there.
Does Jet being said to have “old eyes” mean anything? That I see my brother, my father, my paternal great grandfather’s looks in his face? His Hebrew name, Evon Gavriel Altar [Evon (meaning “stone”, given to him at his bris), Gavriel (meaning “God is my strength,” chosen by me at my Orthodox sister’s behest—to trick the forces making him suffer like death into wondering, “What happened to that kid Evon we were killing? This kid’s name is Gavriel!”], and Altar, (a Yiddish name meaning “old,”given to him by a Chabad rabbi hearkened to Jet’s bedside to pray with me)—did these names and our prayers of Psalms help him live? Did they counteract the sin I committed against God by railing at the “unfairness” of pregnancy?
In the beginning there was
no thing darkness
is beyond
way
is the
here
is present
hear O Israel
hero
the sun O God of
the
father
the son
mein gott a remember what happened
mine
mind
my
soul
sole
sol
sun
son my son
Jet remained on a ventilator as we became more and more impatient for his recovery. After a week or so, we were told that Jet would need a tracheostomy to stint open his airway. That surgery went fine, despite warnings that there could be problems. Jet had a hyperflex Bivona trach—especially long, as directed by the Indianapolis physician and rubbery rather than plasticy. Jet began to need less ventilator support—only 10 breaths per minute.
A week later, it was time to change the trach. The surgery kept getting pushed forward that day, and it wasn’t until 7 P.M. that they were ready to begin. By the time they finished, the surgeon was on his way home from the hospital (a Friday night), probably comfortable in his Mercedes, Ron said. “Nothing to report. Surgery went well,” the doctor said. Yet, that night, Jet began to need more and more ventilator support. 25 breaths per minute… more. We left the room for awhile, and when we came back, the nurse and respiratory therapist were hovering around Jet’s head. One look at the machine—Jet’s sats read below 60, and Ron yelled “Bag him!” which meant that the respiratory therapist needed to use the blue ambu bag to manually push air in and out of Jet’s lungs via the trach. We were in a panic and there was no doctor around (since Loma Linda is a Seventh Day Adventist institution, the attending physicians leave on Fridays to celebrate the Sabbath) . We were left with a teenage-looking girl (a student? a resident?) who looked at me and said “What do you think we should do?” Since Ron and I had been experimenting with bending the trach Jet had had previously and realized it wouldn’t crease like the one he was wearing, I replied with confidence, “Put back in the trach he had before.” We scrounged up an ENT resident, who did our bidding. Jet’s sats rose, and once again, his ventilator support needs decreased. That night I lost complete faith in the wisdom of the Loma Linda physicians who were attending Jet.
During the following days, students would follow the ENT around much to my dismay—my son was a test case to them. They were literally practicing medicine on him. They wanted to do another MRI, a CT scan which would require removing his partially metal trach; I refused. What were they looking for? Signs of brain damage? If there were to be any, we’d discover them eventually anyway, so?
One day, Dr. Razouk, the surgeon who had performed Jet’s tracheoplasty, finally let me hold Jet, but by this time he had contracted MRSA (an antibiotic-resistant staff infection), so we were constantly gowned and masked, and of course, Jet was connected to the vent and to various leads and tubes. The doctors wanted to “sprint” Jet off the ventilator, which one would think would mean short periods, but instead they put Jet on a marathon. One day they left him off the vent for ten hours and then seemed surprised that he needed more ventilator support afterward. This made the doctors decide that Jet would never breathe on his own. I remember one doctor saying “Medical technology is what’s keeping your son alive right now!” to which I replied “My son’s will to live is what’s keeping him alive.” They blamed his failing recovery to matters unknown and refused to send him home with a home ventilator. The doctor who assessed such things refused to meet with us and cited “psycho-social issues” as one of the reasons why Jet’s prognosis would not be good at home. I believe this is largely due to my repeatedly talking to the nurses and refusing to leave the room. One day two technicians I’d never seen before began to give Jet a blood transfusion, and I grabbed one of their arms. “I didn’t give my permission for this,” I said. They claimed that when I had consented to ECMO, I had in fact consented to any blood transfusions. I’ll admit…
I have bipolar disorder, and the stress of this experience was making me quite symptomatic. My own doctor refused to prescribe anything without seeing me, and I refused to drive back to Palm Springs to see her. Instead, I had to ask Dr. Slaughter, one of Jet’s critical care doctors for some Atavan so I could sleep. Clearly, this must have made the doctors think I was unstable, and a day after, they foisted a letter upon us that limited our visitation and prevented our discussing Jet’s condition with any specialists. If we didn’t abide by these rules, they would transfer Jet to another hospital. How ironic that this was exactly what I wanted.
In the meantime, their recommendation was that Jet should transfer to their sub-acute facility called Totally for Kids, a place that my husband reported smelled like a veterinary hospital, with children staring mindlessly, hopelessly at the ceiling, or worse, at television shows like “Cops.” All this and an hour from home? How could they believe that we would leave our child in such a place?
Jet laid in their ICU wasting away for five-and-a-half months, gaining no weight and on a ventilator. We were not allowed to participate in his care. I remember a final conversation with Dr. Razouk who said “We have no further plans for surgery at this time, Mrs. Bautista. He just needs to grow.” But he wasn’t growing and was spending all of his energy fighting off hospital bacteria. I had to get him out of there. No one believed me that we had to get Jet to another hospital, though I was in contact with a UCLA ENT who supported and advised me. We had an HMO, so I needed authorization to get Jet to another hospital—not an easy task.
One day I went to a Mother’s Day breakfast at my daughter’s preschool and a mother mentioned two local doctors to me, both of whose children I had taught. I called them, and one of them, Bill Phaklides, said he would try to help me. I called my husband crying. Alarmed, he asked, “What are you crying for?” “Joy,” I said.
Dr. Phaklides visited Jet in the hospital, made notes, and advocated for us to have Jet transferred to another hospital. Around the same time, our insurance case manager facilitated Jet’s transfer to a sub-acute facility in Orange, CA. I was disappointed not to be going to UCLA, and as sick and gray-looking as Jet was, I was concerned but resigned. After one night in Healthbridge Children’s rehab, and a doctor exclaiming “Why the fuck did they send him here?” Jet was emergency transferred to Children’s Hospital of Orange County (CHOC). Loma Linda cardiologists’ refusal to reevaluate Jet’s heart condition after banding his pulmonary artery (and expanding his trachea, giving him a tracheostomy, a Nissen fundoplication, and a g-tube) led to him being in full-blown heart failure when he arrived at CHOC.
At CHOC, an expert CT surgeon told us that he’d operated on babies much smaller than Jet and wondered at the Loma Linda’s doctors unwillingness to operate on his heart. The surgery to fix the holes in Jet’s heart took place, and after, the doctor (Bleiweis was his name) told us that Jet’s tracheoplasty was “a tour de force,” but that the pulmonary artery band the Loma Linda doctors had put on made of pericardial tissue had simply stretched rather than restrict the blood flowing into Jet’s lungs. We were astonished and pissed, but how could we not be thankful? Jet’s life was saved.
What God Would
For Ellie Claire Goehring (10/24/02-5/5/03)
T here’s no reason why
This happened
to You
I have no idea
My baby
First
TH ere IS LIFE
And then THE re Is DEATH
THERE is No, Life
Fore
Most
that should
be God?
Enough! But
It’s
for the grace of God go I not.
________
SH IT
Baby sleeping
What happens
When
a person
is born (or does
.
Something
What Im perfection and SH IT)
Why
God?
possible
to know
happ
iness does it?
And in the room
The sanctuary filled with light and stained glass
Of a million animals large and small
The worship team sang and prayed for their fathe
Their daughter
Alive upstairs
And the doctors puttering around her
With(er) their machines
And they lost her
No, they didn’t lose her
She said
“God’s will was done today, Danielle.”
God’s will be done
gods will be done
God’s done.
How could you ever forget that?
How ironic that VDay, which celebrates women’s creative power—our capacity to deliver children the greatest of them–was written by a lesbian, and produced in Palm Springs (probably the most gay-concentrated city in the United States). And how duly ironic that it was produced by me–a woman who six weeks later fumed at the fact that she was pregnant again. Some creator.
“With these chronic kids. . . “, I heard nurses and doctors say. Chronic: a word teenagers use for marijuana. If something is “chronic”, it happens over and over again, no? Goldenhar Syndrome happens to about one in 4,000 people. Estimates of children born with long segment tracheal stenosis are inaccurate, because most children “expire” before the condition is discovered.
This is not the end…
11-05
No, I say.