Day 14 Monday, 29 May, 2006

Today is Memorial Day, a day of forgotten remembrance, more associated with pre-summer barbeques than with solemn remembrance.

Cherished friends of Anne & Ken, many of whom met at Harvey Mudd College in the early 70’s, have, for some 20 years, had a habit of amassing at Boulderhaven in Ojai around this time of year for “ Star Gazing”, a weekend of gazing, grazing, and gabbing. Jon and [UCLA chemistry librarian] Marion Mercel who, with Pat Joyce, constitute this years quorum of gazers at the impromptu location outside Aaron’s private suite in the UCLA Medical Center 4th floor ICU.

Aaron’s continued improvement lends a festive atmosphere to the holiday. Natalie declares that we celebrate today “Praise God Party #1”, so a 20-strong contingent of family and friends descend upon California Pizza Kitchen in Westwood Village to rejoice. We are in a partying mood.

Clues to Aaron’s improvement are found in numerous places:

Ventilator settings are closer to normal: 40% oxygen supply saturation, PEEP of 8 or 9.

The Paralyzer was discontinued around noon; Aaron does well all day without it.

The under-damped ringing of the Ventilator Oxygen flow waveform has decreased to barely a ripple. This indicates increasing elastic compliance of the lungs.

Kim and Cheryl (night & day nurses) have more time to catch up with things like cleaning and grooming, so Aaron looks even better.

At morning rounds, the doctors spend less time, are not so somber, and make fewer changes.

The IV racks are less overloaded with bottles and bags of dripping medications, and the bags are changed less often.

Tested, measured and computed values—the numbers of his life—fluctuate less and trend toward normal.

There was considerable discussion among the doctors about discontinuing the Urinator. But it is agreed that it might be premature to do so….Aaron’s boat is stable and heading in the right direction…let’s not rock it too much all at once.

Michaela and Christopher return to Ojai with Grandma & Grandpa Metz after spending the long weekend at the Tiverton house with Mom and all the grandparents. They don’t get to see dad.

At times, we almost forget about the cancer. But never quite….we wonder what is happening deep within the marrow of Aaron’s bones. Is the enemy even now regrouping from last weeks devastating poison onslaught?

Day 15 Tuesday, 30 May, 2006

Between Aaron and the Urinator, the Paralyzer has been flushed into history. When it began its work on Thursday, Aaron’s sedatives (Propofol and Ativan…Aaron clearly prefers Propofol, but the doctors seem intent that he should have Ativan) were increased. The paralyzer Vecuronium does not suppress consciousness or pain….it is essentially a powerful muscle relaxant. Being conscious and paralyzed is frightening, so Aaron’s sleep has been near comatose…in this deep-sleep state, Aaron could undergo surgery without pain. Today, with the Paralyzer gone, Ventilator settings closer to normal (40% Oxygen, PEEP 4, 30 breaths/minute, tidal volume 400), and Aaron beginning to take control of his own metabolism, the sedatives are intermittently reduced to see if he is ready to be weaned from the tube down his throat that delivers oxygen to his lungs. Aaron begins to surface for a few minutes at a time. Fran, his day nurse who is bound to have him up an walking sooner than later, allows him to surface to the point where, when she asks if he is in pain, he shakes his head. Another time, Natalie asks Aaron if he is uncomfortable: he nods.

He is intermittently aware of the tube down his throat. The more he is aware, the more he is wracked with an apparently overwhelming gag reflex. As the day fades toward shift change and into night, these intermittent spasms continue, and seem to worsen. His body arches in violent paroxysm; silent tears burst from his still-bloody, swollen, and mostly-closed eyes.

His systolic blood pressure shoots up to 160. The Ventilator senses that something is very wrong that it can’t correct, and begins its wail of desperation. The creators of the Ventilator must have worked long and hard to give it this most disturbing and demanding voice. The Urinator complains less demandingly that blood flow is cut off, and it stops. It must be restarted immediately to prevent blood from clotting. On several occasions, it isn’t restarted fast enough. The Urinator ups the ante of its compliant; the blood has clotted, and its filter must be changed. The spaghetti of tubing threaded through the Urinator like movie film through an old fashion projector is removed, The tubes are disconnected from spigots piercing Aaron, the filter is detached, a new set of tubes is threaded, another polymer kidney is attached, the tubes are reconnected to Aaron, and blood begins its tortuous round trip through the Urinator, as it begins to fill yet another bag with pale yellow urine.

We tell Aaron what a great job he is doing, that everything is going well, that he’s getting better. It’s hard to say that he is convinced.

The fever is back and rising

Day 16 Wednesday, 31 May, 2006

The wracking and gagging continue through the night. Aaron sweats profusely at times; his fever rises. As he becomes more aware, he struggles to move limbs still laden with fluid (though drained considerably of some 2 gallons over the last few days) and bristling with tubes and wires. He is restrained for fear that he will rip asunder the conduits of life which connect him to his machines. The intense effort seems to exhaust him…the numbers of his life reflect the toll. Has he overspent his precious oxygen budget in fruitless struggle?

With morning and a new shift, Kamela observes his condition to the doctors. He is mercifully sedated more heavily, and rests somewhat easier for the rest of the day. The Fever persists, its source still a mystery. At 39.5 C, he is packed with ice. There is an enemy within seeking to destroy that which it may.

Praise and Prayers (By Natalie)

This last weekend was amazing. I prayed that we would have a Memorial Day Weekend Miracle. God sure gave us one. Before the weekend started, Aaron’s lungs were doing poorly but starting on Saturday, we began to hear word that he was turning around. There was such a dramatic improvement in his lungs. Praise God for answering that prayer of mine! We learned on Sunday night that the main doctor considered him to be in a recovery phase. On Monday, we even had Praise God Party #1! When you are praying for Aaron, please be sure to give God glory and thanks for the great things that he has done so far. By the way, Michaela (our daughter) got her miracle of healing on Memorial Day weekend 4 years ago—that is when her reflux was diagnosed and she began to eat.

Today, Aaron had a little bit of a setback. First, he got a really high fever. We are praying that his temperature will return to normal and that his body will recover from the chemo. Secondly, he was taken off of the sedation on Tuesday while he was still on the ventilator. For a while he was doing OK but he then started gagging on the ventilator for 12 hours straight. It was really amazing to see him open his eyes—he even started crying when he saw me. He also answered a couple of yes/no questions by shaking his head. Today, they had to bump up the sedation and try to get him regulated again. It was probably too soon to take him off of the sedation yesterday.

I have so many Bible verses that I am clinging to. God’s Word is true! My verse for today is “But without faith it is impossible to please God, for he who comes to God must believe that He is and that He is a rewarder of those who seek Him.” Hebrews 11:6. I am still praying in faith believing that God can, is and will continue to heal Aaron for His glory. When going through trials, God is interested in where our faith will be shown to be. I would encourage you to think about where your faith lies—is it the medicine, the doctors, God, something else? My faith is in God who created the universe—who created Aaron!—there is nothing that is too difficult for Him!

Thanks for the continued prayers and all that you all are doing. We thank you for standing with us. (If there are any Bible verses that God lays on your heart, send them my way!)

Day 17 Thursday, 1 June, 2006

Our concerns seesaw in concert with Aaron’s metabolism. Parameters so nicely behaved 3 days ago and trending better seem to have lost their compass and fluctuate wildly. Systolic blood pressure surges to 200 and plummets to 60.

Ongoing platelet transfusions aren’t enough staunch the flow of Aaron’s blood through leaky capillary walls. He is bleeding internally. But it’s not like he is bleeding somewhere—he’s bleeding everywhere. Transfusions of whole blood are begun. These, together with an open bar of medicinal cocktails, keep his seesaw within the bounds of life.

One of Aaron’s life lines is the CVP (Central Venous Pressure. This dual use line provides a tube through which to ply Aaron with cocktails, as well a transducer from whose pressure measurements inside the atrium the effects of the cocktails may be surmised.) line which pierces through the right side of his neck into a vein and threads its way down into the right atrium of the heart. Kamala notices that the skin is a little red around the entry point. She also observes that, over the past few days, Aaron tends turn his head to the right, and drool tends to run down into the vicinity where the line pierces the skin. Perhaps this line is a hideout of the infectious allies of the enemy. The line has been in for a while, so even though days of negative cultures performed in the vigilant search for infection have turned up nothing, the CVP line is removed and reinserted into the left side of his neck. As a further precaution the arterial probe line is removed from Aaron’s left wrist and inserted into his right wrist.

To further regain control and stability, the Paralyzer Vecuronium is re-enlisted.

Aaron is returned to deep sleep and the stillness of paralysis.

By midnight, his numbers are stable and acceptable.

The fever is under control.

Aaron is not ready to breathe on his own quite yet.

Day 18 Friday, 2 June, 2006

Aaron begins the day paralyzed and mostly stable. The fever continues to abate; by evening it is gone.

More platelets and blood (yesterday’s post was in error. The blood transfusion was not whole blood. It was “packed cells”, a sort of high-fructose corn syrup for vamps and patients with low hemoglobin. Packed cells is blood minus white cells and other stuff, leaving only red cells) are transfused. The hemoglobin count does not increase as hoped, but its downward trend stops and it remains stable.

Early afternoon, Aaron’s blood pressure plummets. Perhaps the Urinator, which goes at the behest of its settings rather than on demand from Aaron, is going too much…perhaps Aaron is too dry. Before taking more drastic measures, Kamala throttles back on the Urinator, opens the spigots of some IV fluids, and transfuses more blood and platelets. Slowly, the pressure rises to less alarming levels and eventually returns to normal.

For the last couple days, the Urinator’s output has been tapering off as Aaron’s kidneys take on a greater share of the load…Aaron is outgoing the Urinator by about 1/3.

Between the 2 of them, they are outputting just about the same amount as is being dripped, injected, transfused and dialyzed in.

It’s a tricky balance with leaky blood vessels. The heart likes it wet; the lungs like it dry. Too dry, the heart can’t pump; too wet, the lungs can’t breathe.

At noon, the Paralyzer Vecuronium is stopped, and over the ensuing hours Aaron remains deeply sedated and stable without requiring its merciful but dangerous services.

Day 19 Saturday, 3 June, 2006

Aaron continues stable without the Paralyzer through the night and into morning, deeply sedated, and compliant with the Ventilator. Sustainable settings of the Ventilator maintain good oxygen levels. During the day, the givers of his sleep are withheld just enough that he occasionally, without harm, bucks the Ventilator; he is not awake enough to be gagged by the life-giving endotracheal tube through which the Ventilator provides it’s invisible vitality.

His blood pressure vacillates on the low side of normal, and despite the last 2 days of transfusions, his hemoglobin count remains low. There is the nagging suspicion that, in addition to systemic leakage, there may be localized bleeding. A picture of his insides could help assess the damage wrought by the enemy. A damage report is needed; the report requires an elevator ride to the B-level basement, 5 floors below his 4th floor ICU suite.

Late afternoon, an expeditionary force of moving technicians is assembled as Aaron is readied for a trip the CT scanner in the basement. Aaron does not need to leave his wheeled bed for the trip. Some of Aaron’s machines will travel with him, and some will be temporarily replaced with more portable versions. Cables are disconnected from the vitals monitor and the numbers of his life appear on a small portable monitor placed at the foot of his bed. His air mattress is detached from the pump and deflates. The Urinator is disconnected. It will stay behind; for the short trip it is not needed. The IV rack is freed from its location and its life lines to Aaron are organized and somewhat untangled. It will be wheeled along with the bed. The bed is jockeyed into position to go through the door. A slim green cylinder of oxygen is laid on the bed next to Aaron. At the very last moment, his line to the ventilator is detached and connected to a clear, plastic bladder the size of a large football between Aaron and the green tank. Aaron’s life is now in the hands of the Richard, the respiratory technician who rhythmically squeezes the bladder, breathing on behalf of Aaron’s damaged lungs. The flotilla begins to move toward the door.

Just as Aaron’s blood pressure begins to drop.

Tiny Kamala, who is directing the operation with quiet efficiency as she keeps glancing at the portable monitor, watches as the numbers of Aaron’s life quickly ebb. She does not watch long. The expedition is aborted at the doorway. The Constrictor Norepinephrine, at the ready, is administered. Aaron’s vessels obediently constrict, his blood pressure rises. Line by line Aaron is reconnected to his machines.

He regains stability. The rest of the day passes without event.

A damage report is needed. But Aaron is too damaged to get it.

The basement seems like a long ways away.

Please Keep Praying (by Natalie)

This is really tough! I’m sure you all realize that! Tomorrow it will be two weeks since Aaron will have been sedated. I miss my best friend. The kids miss their daddy. It is really hard to keep going when seemingly there is so little progress. But I believe that God is at work healing Aaron’s body. I don’t know for certain what God’s plan for us yet is but I do know what the Bible tells us what we should do. I am still praying in faith that God will heal Aaron for His glory. Jesus is my hope and my strength. I am so thankful for His mercies thus far,in fact I see new mercies every morning…Great is His faithfulness! I covet your prayers. It means so much knowing that so many people are petitioning God on our behalf. I ask you to keep us in your prayers because prayer changes things!

Day 20 Sunday, 4 June, 2006

Natalie is the first to observe Aaron’s hair falling out en mass. This most cosmetic consequence of chemotherapy will mark Aaron to the world as certainly as his blood counts mark him to the doctors: he is undergoing treatment for cancer.

But our interest is not in the loss of his hair; our interest is in the breath of his life.

After yesterday’s aborted expedition to the CT scanner in the B level basement, there is some strategizing as to how the trip might be accomplished.

A test is performed: Leaving all other life lines attached, Aaron is disconnected from the Ventilator and connected to the hand squeezed oxygen bladder. Aaron seems to sense that O’bladder is an imposter…it is not the Ventilator. His dysfunctional relationship with the Ventilator is at least a familiar one.. His pressure drops as before. Some way around this will need to be devised.

Another couple bags of blood and a bag of platelets are given. This time, Aaron’s hemoglobin count rises as it should.

Aaron’s time with the endotracheal tube is drawing to a close. It has been giving him life for 2 weeks, but like so many life saving measures, it does not come without risk. Long term use of a tube jammed down the throat risks damage. But Aaron’s lungs are not ready to breath on their own. His relationship with the ventilator needs to continue. Perhaps it can be made a little less dysfunctional and more tolerable by connecting the Ventilator to a tube through a small hole cut in the throat and directly into the windpipe (trachea) below the larynx. Aaron is scheduled for a tracheotomy tomorrow.

Aaron spends most of the day sedated to a level just below awareness. There is some concern that he should be a little more aware than he is, that he should be a little less compliant with the Ventilator than he is.

Day 21 Monday, 5 June, 2006

The ICU on the 4th floor is a round room, it’s eight patients like short spokes of a large hubbed wheel, feet facing the hub. There would be 12 spokes, except at opposite sides of the periphery are large double doors through which oscillates the transient community of the ICU. The fours spokes on each side of the double doors are enclosed, small rooms with their own doors opening to the hub: the suites. The suites are occupied by those for whom infection is most deadly; those who have no white cells to provide protection against infectious marauders. Twenty-three year old Hector’s suite is opposite Aaron’s; their feet face each other.

Hector’s mother, widowed a year ago and usually these last weeks surrounded by a warm and supportive family, sits alone in the waiting room down the hall from the ICU sobbing quietly. Anne crosses the room, sits beside her, wraps her in arms that know the meaning of sorrow. Hector was diagnosed with AML in January. Apparently beating the odds at home on leave from the hospital 3 weeks ago, a small infection in his lungs qualified him for his suite a week before Aaron claimed his. The infection did not stay small for long. Hector’s mother is told today of the extent of his lung damage.

At about 2 pm, we are shooed from the ICU as the tracheotomy scheduled 3 hours ago is performed. It’s a funny thing about medical interventions: they are messy, bloody affairs that the intervenors quite adamantly insist be hidden from those who are the beneficiaries. Aaron must be cleaned and tidied before we are allowed to see the spanking new tube protruding from his throat and connecting him to the Ventilator.

Cleaning for the surgery and tidying up afterwards has claimed most of his beard. No need for a razor; you can get a good shave with a washcloth and a week of poison therapy.

Aaron’s suite is too small for the surgeon’s portable surgimobile and the Urinator. The Urniator is disconnected. It is taken away, and not returned. Aaron is going on his own.

Still unable to take the elevator trip to the basement, Aaron’s abdomen is scanned with a portable ultrasound wheeled into his suite.

Early in the morning, Aaron’s sedative was reduced to the point of awareness, and a repeat performance of gagging spasms of last week; blood pressure shooting up to 200, racing heart, breath rate nearly 50. He is quickly returned to deeper sleep, and for the rest of the day he is stable, accepting the tracheostomy without a hitch.