Category: The Initial Trauma

Today starts with the familiar pattern: sleep, awake, cough, vomit, back to sleep. Coughing strong enough to sprinkle the inside of the translucent corrugated oxygen tube with blood. (Blood: In the real world, blood is supposed to stay tucked away inside the veins of one’s body or carefully hidden from view in a monthly exercise of female discretion. The sight of blood outside the body makes the squeamish stomach churn. In the ICU, blood is everywhere: dried, fresh, venous, arterial, puddled, sopping, dripping and squirting. What doesn’t erupt on its own or in conjunction with ever so much piercing, poking, slicing and stitching is drawn from veins and arteries like money from an account with perpetual overdraft protection. The sight of blood is so common, a little sprinkled inside the breathing tube doesn’t seem like such a big deal. And it probably isn’t.)

It occurs to the doctors at morning rounds that a cough suppressant might be worth trying. The savior of many a miserable soul trapped in the hacking clutches of bronchitis is prescribed and later administered: Codeine. Unfortunately, Aaron is sharing his nurse Suzy with a more demanding client, so she doesn’t have the time to reduce the giver of sleep and monitor the codeine’s effect. By late evening, Anne and Natalie convince the night nurse to reduce the Propofol enough to let Aaron really wake up. He does, and he is awake enough to play the ICU version of “20 questions”…”Are you in pain?” “Shake.” “Are you uncomfortable?” “Shake.” Do you want to be suctioned?” “Nod.” (In the ICU, clear plastic canisters fill constantly with bloody phlegm from vacuum lines whose sucking tips are regularly being threaded into lungs and poked into noses and mouths and throats that cannot blow, sniff, spit or swallow.)

Aaron deliberately performs leg and arm lifts. He’s getting in shape. He begins to cough, but he is awake enough now to suppress the cough and keep it in check by force of will. He repeatedly lifts his left arm (his right arm is still tangled in tubes and probes), each time a little higher, angling toward the trach tube/oxygen supply tube coupling. “Do you want to take out the tube?” “Nod.” Anne and Natalie are alarmed. He touches the coupling with his index finger and smiles. He got ‘em.

Aaron has found a sweet spot. His giver of sleep is reduced to the point that he is awake enough to participate in his recovery and still not be in pain. Very frequent suctioning by Anne and Natalie and conscious control by Aaron keep the coughing under control. Aaron would like to suction his throat himself, but he’s not able yet to do so. A trembling left hand can reach his face momentarily, but falls back quickly to the bed.

Aaron is doing all the breathing work himself, supported only by extra pressure and oxygen. As a test, the pressure is reduced for a while to a lower level before returning higher. It appears that he passes the test. As the day proceeds, the work of breathing seems to tire him, but his numbers stay good and he remains in touch by discernable nods and shakes.

Less than 3 weeks ago Aaron’s white cell count was zero. As the poisons finished and were flushed, white cell production began again, deep in the bone marrow where there still lurk mutant stem cells. For the last few days, the white cell count has been noticeably doubling nearly every day. Exponential growth rates may be quite normal….up to a point. Today, there are about 11,000 white cells in every microliter of Aaron’s blood. Though twenty time lower than it was a month and a few bags of poison ago, this is on the high side of normal. If these are bona fide white cells and if they are here to fight Aaron’s sinus infection and keep other infections at bay, we laud them…they are our allies. But if they are mutants, we curse them.

Should we laud or should we curse? The answer resides in memory cells of the UCLA Medical Center’s on-line medical records computer system. For lack of a password or a convenient doctor (doctors and questions we have for them never seem to be simultaneously available. While the rest of the world has discovered TCP/IP as a means to effective yet non-simultaneous communication, doctor/patient-family communication seems decidedly last century), we not know. Perhaps tomorrow.

The dancing fever continues to vex.

Hector died today.

Theoden king of Rohan said it in the movie awkwardly but well, “No parent should have to bury their child”

No preparation can ready the heart of a parent for the death of a child. Bands of anguish constrict the chest like steel strapping. The heart aches not from bittersweet memory, but from the crushing boa constrictor of grief. There is but one desire, one overwhelming and unfulfillable plea; that the parent’s life might be exchanged for the child’s. We ache for Hector’s mother.

We finally hear from Dr. Paquette that Aaron’s white cells, having multiplied exponentially for the last few days to over 20,000, are bona fide. The are our allies. They fight with us against the enemy; we laud them and give thanks. Their numbers are testament to the defensive battle they wage inside Aaron.

Aaron spends all day weaned from the ventilator. A little extra oxygen and no extra pressure work just fine.

Anne reads to him from “Princess Bride” for much of the day. The reading is interrupted by intermittent coughing fits and trembling fits. The trembling fits look like panic attacks: Eyes sometimes wide and terrified, various limbs shake with involuntary tremor. Perhaps it is panic. The survival drug of overstressed middle class America is prescribed: Vallium

Aaron inflates the concept of twenty questions to 26; he gets Natalie to spell “Turn”….Turn down the bed.

More searching for the source of the fever reveals new developments. Leukemic blood, while often low in platelets and not clotting where it ought, sometime clots where it ought not: there is a clot near the top of Aaron’s right leg. Because of the bleeding in his brain and the whole platelet issue, he cannot be given thinners. A clot catcher will be installed in the inferior vena cava to make sure clots in the lower extremities do not find their fatal way to the heart or brain.

It appears that the gall bladder may be badly infected. There is discussion of extraction or drainage. No decisions are made.

Of the 11,000 new cases of Acute Myelogenous Leukemia each year in the US, most are grandparents who will be missed by friends, siblings, children, and grandchildren within a couple years of diagnosis. Few will be missed by parents. Only about 100 are young adults like Hector, Eric, and Aaron. Eric, also in his 20’s, was issued his ticket to the 4th floor ICU a couple weeks ago by a lung infection. The invaders of Eric’s lungs are not bacteria. They are fungus who’s rent-free squatting in the air conditioning unit at his home might have gone unnoticed for years by legal residents with functional immune systems. But Eric’s defenses were demolished by the powerful poisons and radiation given to destroy his bone marrow and his ability to reject stem cells harvested from the blood of a stranger in Germany identified by an international computer database of potential donors. Fungus infections are hard to fight. That he yet lives is due to transfusions of white blood cells from his mother, which fight on behalf of his own decimated defenses.

Aaron’s white cell count has leveled off at about 30,000, the high end of a normal response to bad infection. While the search for infection continues, it is the clot in his right external iliac vein that is most immediately worrisome. On the theory that if there’s one, there may be more, and on the knowledge that, for reasons unknown, clots which can break loose and wreak havoc to the heart and lung usually come from the legs, it is deemed important to install a clot catcher in the inferior vena cava so that any clot detaching from either leg will be stopped on its way to the heart. Through a small incision above his left thigh, a tiny, wispy titanium daddy longlegs spider kind of kind creature is inserted and threaded up to the vena cava. There, it is opened like a miniature cocktail umbrella. It spidery feet brace against the walls of the vein. It will not allow any chunk of stuff big enough to cause damage to pass. While it is possible to remove the catcher, it is also possible that it may never be removed. Just another small uncertainty of the future.

With the clot catcher in place, it is now time to confirm or disprove the suspicions about the gall bladder. The gallbladder is a small, pear-shaped bladder whose purpose in life is to receive, concentrate, and store a few tablespoons of bile manufactured by the liver. An Inuit whose dietary habit consists primarily of gorging on whale blubber might find the gallbladder useful, since bile is needed to digest fat and the liver manufactures bile only so fast. But for most of us, it’s an optional feature with little market value.

Aaron is wheeled for his second field trip (it’s no big deal anymore) of the day down to the “A” level basement into the department with the ominous name “Nuclear Medicine”. A scintillation detector the size of a fat swamp buggy tire attached to a movable arm is positioned a few inches above Aaron, centered on his invisible liver. It is big enough to nearly touch his chin. A slender box that might be a gift box for an expensive necklace is brought into the room. Except this box is made of lead, and in it is a syringe containing radioactive metastable Technetium 99 (gamma emitter, half-life of 6 hours) which is injected into Aaron’s bloodstream. The Technetium finds its way to his liver, and Aaron’s radioactive liver now glows brightly on the monitor attached to the detector. Every minute or so, a new image is captured and saved to an ancient (pre-GS3) Mac (one of the few in this decidedly non-Mac environment). In a normal healthy person, part of the glowing liver will fade over the space of an hour as the radioactive Technetium moves with bile produced by the liver into and through the gallbladder.

Aaron’s whole liver stays bright for an hour and a half. Something is definitely wrong. The bile is going nowhere. Surgery to remove the gall bladder is scheduled for tomorrow morning. Perhaps this will put an end to the fever’s continuing daily dance and the growing pain on the right side of Aaron’s stomach; pain enough to part the opiate veil. Natalie wonders if the continuing periodic tremors are perhaps not withdrawal or panic, but pain.

Cousin Kandice, fresh out of fourth grade and into summer, visiting from Santa Barbara, asks her mom if God is married. (Mom’s know about these kinds of things.) Tami replies, deferring to orthodox theology, and Kandice observes wisely that she didn’t think so, as Mrs. God would never have allowed this to happen to Aaron.

Natalie decrees that Father’s Day be postponed until further notice. We’ll wait for Aaron to give the notice.

Dr. Kim comes by early and talks to Aaron. She takes his hand in hers and asks him to squeeze if he is in pain. He does. She asks him where he hurts, and he, with slow and trembling certainty, guides her hand to his lower right abdomen….right on top of the gallbladder. She asks if he wants more pain medication. He mouths “More.”

Aaron and his blocked, inflamed, and necrotic (fancy word for “dead”) gallbladder part company about the time most congregations are listening to sermons honoring fathers.

A few hours post op, Aaron is coming around and is intermittently awake, always nodding to “are you in pain?” Shots of Dilaudid keep things under control. Aaron is moving more than he has since the beginning of ICU. His nurse Jen [the Bomb] suggests it might be time to try the trach talker. A one way valve placed in the opening of the trach tube that allows air in but not out, together with a deflated trach doughnut (cuff), allows air to be sucked in through the tube and then to pass by the vocal chords on the way out of the lungs. Richard from respiration suctions top and bottom (mouth and lungs) deflates the doughnut, plugs in the talker, and asks Aaron to say “Hello”. Aaron tries, only gurgles. Richard says good, just needs more suction, which he applies. Then again “Aaron, can you say ‘hello’?” Gurgling and ultra slow-mo but distinctly comes “HHHHHHHEEEEEELLLLLLLOOOOO” Aaron has spoken his first audible word in a month. We are elated. Immediately, he starts another … “PPPPPPPAAAAAAAIIIIIII…” Whether or not it was “pain” we cannot be sure, as he fell asleep before he finished. The test is a great success. The talker is removed.

Toward evening, Aaron is uncomfortable. He is moving by himself more than he has in a month. He turns completely on his side without assistance. This is a good sign.

Aaron’s heart rate is irregular and goes up dramatically when he moves around. Natalie keeps telling him to settle down and relax. At about 11 pm, Natalie tells Aaron one last time to relax and be still. Aaron grabs a handy washcloth and smacks her repeatedly. Then he mouths kisses. This is a very good sign.

The gallbladder is the most likely suspect so far as the source of the taunting fever. We hope that its departure will hasten our belated Father’s Day celebration, when Michaela and Christopher get to give dad the hugs and kisses denied for over a month now by the enemy’s cruel interdiction.

Anne sits with Aaron through a restless night, during which the ventilator was reconnected to give his lungs a rest. His breathing is much improved over the last few days; nearly normal, large volumes and good respiration at about 15 breaths/minute.

By early morning, Aaron is off the ventilator and back to just oxygen. Natalie is playing 20+ questions. Aaron really wants something. Finally, “Do you want to sit up?” “Nod.” Natalie puts in a request, and the Chair is wheeled into Aaron’s suite little before 9:00 am. Unlike coach airline seats which make a mockery of the word “recline”, The Chair reclines to totally flat, allowing Aaron to be slid from his bed to The Chair before sitting him upright. He is strapped in and The Chair moves him to a slightly reclined sitting position. He sits the rest of the way up by himself. He smiles and rocks forward and backward, exercising his torso. “Do you want to talk?” Vigorous “Nod.”

He is suctioned top and bottom. Suctioning the lungs fills the suction tube and produces vigorous coughing, which sprays bloody gunk through the trach tube and around the room. Unlike the coughing of previous days, this coughing is useful. It rids him of gunk and makes him feel better.

The talker valve is placed in the trach tube and Aaron immediately, clearly, without gurgle, in a thin, tremulous, singsong tenor voice, says “Hello.” And then “I can talk! I can talk! I can talk! It’s been so long since I’ve been able to talk.” His eyes, still bloodshot and popped impossibly open to several saucers past “wide-eyed”, sparkle.

The ICU doctor team is making rounds as Aaron sits facing the door of his suite and the team standing outside the door. He smiles at them and moves his hands in applause. “Thank you.” The doctors beam as they seldom do in the ICU. They are winning this round, and they know it.

While still sitting in The Chair, Aaron broaches the subject of walking. He’s quite certain he is ready. George (nurse today) calls Physical Therapy and tells Aaron that Physical Therapy will come to help with the walking. For the rest of the day, when not hallucinating, getting Physical Therapy is Aaron’s constant theme and consuming focus. “Are they on the way? Are they here yet? When are they coming? I’m ready to walk. I’ve got to get out of here. I’m ready to go home. Mom, let’s go home. Get me out of here. They are holding me here and not giving me water. Is Physical Therapy coming? I have no pain…..let’s go for a walk.”

He offers $200 to get them here now. When told they are busy, he ups the offer to $300. He tries to borrow money from one of the doctors for the payoff to Physical Therapy. He promises Mom that he will spend no money if she will take him home. Wheeling and dealing, persistent and focused, Aaron is true to form, though the form is a tad cracked.

Aaron is ready for bed after a half hour in The Chair. In bed, he fidgets, tosses, and turns all day, getting ready to walk with Physical Therapy and hallucinating. The hallucinations would be funny if they weren’t so wearing. Natalie and Anne spend hours closing imaginary drawers which contain pieces of Little Red Riding Hood. Natalie is Zorro, tracing Z’s on Aaron’s chest and fighting evil.

Did someone substitute a mixture of methamphetamines and LSD for the Valium? George thinks the Valium might not be having its expected effect, so he stops it. By evening, Aaron is more lucid. He asks for The Chair again. When the 20 minute operation to get him off the bed and into The Chair is complete and he is sitting nicely, Natalie asks how it is. “Anticlimactic,” is his single word reply, pretty much summing up this afternoon.

He tires after a while, is returned to bed, and falls to a quiet sleep, his first since that which came by way of the anesthesiologist at yesterday morning’s surgery.

Aaron and Eric (who has improved slightly over the last few days) are the youngest residents of the ICU. They have also been there the longest.

The eight patient spokes do not stay empty for long. The ICU seems to have an effective JIT order system for new patients. The names written on the patient/nurse/doctor assignment whiteboard change daily, and empty spokes are filled within hours. There is little discussion about those who leave. But when we are in Aaron’s room and we are asked to shut the door for 5 minutes, we know that in one of the spokes the doctors did not win, and another family will grieve.

And yet we believe that for Aaron, Father’s Day is coming soon.

Physical Therapy finally arrives this morning. They do not disappoint. Aaron sits in a regular chair, with his feet on the ground. He is helped to his feet, and with support, stands. He is elated. Physical Therapy had intended a passel of beginner movements which they scrap, as he is so advanced. The work done by Anne and Natalie moving his fingers, hands, arms, feet, and legs when he could not, and Aaron’s own leg lifts and arm lifts while he was still in bed and barely conscious have paid off.

By late afternoon, Aaron is ready to go at it again.

His white blood count, which had stalled for a couple days at about 30,000, doubled again to 60,000 before retreating slightly. The count is nearing danger territory. We had hoped that the infernal fever, together with the elevated white cell count, would have departed with the evicted gallbladder. Neither shows any sign vacating.

The ICU is where you live if you can’t live anywhere else. You don’t choose to go there, don’t choose how long you stay there, and you don’t choose which way you leave there. The front double doors of the 4th floor ICU open to the West Wing corridor. Through them, patients, visitors and staff flow back and forth in the irregular rhythms of ICU life. The back double doors open to eternity; transport teams push covered gurneys through them on their way to the morgue.

Today, Aaron left through the front double doors to take up residence at room 1041 in the West Wing on the 10th floor of the UCLA Medical Center. He is well enough to live outside the ICU.

The 10th floor is the last elevator stop up. Through north facing windows we overlook the UCLA campus and can see to the west the Getty museum, where some of the world’s finest tableaus of life hang on walls and are perused by admiring patrons. Here in the Medical Center, dramatic tableaus unfold daily as involuntary denizens are subsumed into them, and consumed by them.

The 10th floor is an “All Suites” floor. Cancer patients do not share rooms. Doors are always closed; the corridor is usually empty. Infection is the enemy’s most persistent, pervasive, and deadly ally; isolation is a key defensive tactic.

Natalie noticed day before yesterday that Aaron’s upper right chest was swollen. An ultrasound scan revealed no clotting. Yesterday, a multitap (like an octopus of tubes) IV line which penetrated the swollen area was removed on suspicion of infection. Today, his white count drops to 30,000, and for the first time in over a month, the fever does not perform its daily dance.

Aaron is mostly lucid. (Yesterday morning he announced that he had fixed a number of bugs in the hospital computer system.) When he moves his hands, they tremble like hands whose owners are inflicted with advanced Parkinson’s disease. He talks only a little before tiring. The talker valve restricts airflow enough that it makes breathing harder; he wants it out most of the time. He is helped to sit up again for a short while.

He does not like to be left alone. He understands that he cannot fix problems, cannot operate the bed controls, cannot operate the call button, cannot summon help. In the ICU, attention is close and constant. The 10th floor by comparison seems deserted. A visitor’s cot is brought in for overnight stays. Isolation is tempered so it does not become desolation. Room 1041 feels almost homey.