Day 8: Tuesday, 23 May 2006

Aaron is better today. The fever slowly retreats, and by morning he’s a perfect 37C (Multiply by 9/5, then add 32 for last century’s Fahrenheit units.)

Part of better is how he looks. Better, of course, is relative. Not relative to last Tuesday morning, 8 days ago, when he looked like Aaron. Looking that far back is as imprudent as looking that far forward. Relative to yesterday is our point of reference. A little less puffy, his swollen-shut eyes not quite so distended, his skin not quite so sallow, the sores not quite so raw. But if you look past the cyborgian tangle of tubes and wires protruding from every natural and inflicted orifice of his body, he looks better.

The other part of better is the numbers. There’s lots of numbers, pages of parameters that are measured, compared, studied, and assessed. The doctors stare and scribble and question and comment. What does this number mean? But what does it REALLY mean in light of this other number? And what does this other number mean in light of such-and-such a drug, chemical, or procedure?
Bottom line, the numbers say Aaron is possibly just slightly better, so the doctors are pleased.


Today, we are fasting and praying for Aaron’s continued recovery and healing. if you’re not called to fast, don’t, but no matter what your beliefs, you can talk to God. If you believe in God, surely you believe God can heal. If you’re agnostic, just tack on an “if You exist” to your prayer. If you are atheistic, just think nice thoughts about Aaron. The important thing is that everyone is petitioning to something bigger than themselves on behalf of our friend aaron today.

Day 9: Wednesday, 24 May 2006

Today started with a fever that spiked at 39.5C during the wee hours. The search for the fever source turns up no hint of infection. The fever persists, albeit lower, all day and into the night.

Until yesterday, Aaron has been getting 100% oxygen. Oxygen, not surprisingly, oxidizes stuff, and 100% oxygen will eventually ruin tissue. Yesterday the Oxygen was reduced to 70%, but today it’s back up to 90%, as 70% wasn’t quite good enough to keep up with the body’s needs. It’s pretty clear there has been some lung damage. Most likely the damage is from a condition called Leukostasis, caused by the legions of mutant leukocytes that were present a few short days ago. As of now, there are virtually no white cells left alive….just legions of dead enemy cells that are stressing all the vital organs as Aaron’s body struggles to eliminate them.

Tonight, the last bag of Cytarabine will hang, and the initial onslaught will complete.

Day 10: Thursday, 25 May 2006

This has been a rough day. Aaron has been very unstable. His vitals are all over the map.

He’s got a high fever, every indication of a systemic infection. Moving him just a slight amount to perform a procedure causes his blood oxygen to plummet. There’s no place to go up, as supply oxygen concentration is 100%. All symptoms point to a systemic infection, but culture after culture reveal nothing. Every point of entry (probes, catheters, IV’s) is cultured for local infection; all are all negative.

The cold blanket brought in to help control the fever can’t be put under him, as he is too unstable. The blanket is spread over him, but it doesn’t work well. The refrigerator machine that pumps coolant through the blanket sits in the room. The room air conditioning can’t keep pace with the additional kilowatt being dissipated by the refrigerator. The machine is stopped; Natalie and Anne take turns using low-tech, time-honored wet towels; this works. The fever comes down.

Camela (his CCU day nurse today) works non-stop, never quite getting ahead of the demands. It took two hours early this morning to regain stability. Stability is finally achieved, but comes at an unsustainable price: 100% oxygen, and 22 cm PEEP. (Positive End of Expiration Pressure). This means that all the tiny air sacs (alveoli) in Aaron’s lungs are being constantly inflated like millions of tiny leaking balloons filled with pure oxygen. The breathing machine must keep the balloons puffed up to prevent collapse. Several quarts of extra fluid have accumulated in Aaron’s body due to the intense hydration required for successful induction of the poisons, and the inability of Aaron’s kidneys to eliminate the excess. The lung damage inflicted by the mutants (and possibly the poisons that killed them…there is some evidence that the mutants initially responded to the poison by further mutating, becoming more mature and more destructive.) is allowing these accumulated fluids to leak into the airways, so the leaky balloons have to be constantly inflated. The constant pressure and the pure oxygen, will soon destroy the lungs they are heroically working to save.

In spite of being heavily sedated, Aaron continues to initiate breathing on his own. This is of course a marvelous thing that living bodies are programmed to do without conscious effort: breathe. But the beat of the drum to which Aaron’s lungs are heaving is too slow. He needs to be breathing like he’s running a ¼ mile, not lounging on an air mattress (He actually is on an air mattress, which slowly inflates and deflates to provide a small amount of very slow movement to Aaron. Other than the machine-induced heaving of his chest and the slow, barely discernable movements of the air mattress, Aaron is completely still. The evidence that Aaron is alive are the numbers—numbers flashing on monitors, numbers of measurements from instrument probes outside and deep inside his body, numbers from computers calculating values from the measured numbers, numbers printed on test reports, numbers scribbled on paper, numbers that can lie to the ignorant, but render their arcane secrets those who, like Dr. Bajaj and Dr. Lee, seek the truth that lies beneath the numbers. This is medicine by the numbers: the numbers of life.)

The ventilator synchronizes its efforts with Aaron’s lounging pace, but it’s clear that at this point, the machine can do better if it could take over; Aaron’s efforts have become interference. The decision is made, and in late afternoon yet another IV bag is hung along with the14-or-so others that have been accumulating over the last week. Vecuronium Bromide begins to drip, totally paralyzing Aaron so he is unable to even attempt breathing. The machine is now in complete control. No part of the precious oxygen budget needs to power the lungs, and the machine’s drummer sets the pace.

The improvement is immediate; a small window of margin opens. The moment-by-moment struggle for stability a little less intense.

Aaron’s kidney’s are doing a yeoman’s job, but their efforts are not enough. Between the induced chemotherapy poison, the poisons created by dead mutants, and the great deal of other chemicals and fluid going in through the various intravenous tubes, his kidneys can’t keep up.

So yet another machine is wheeled into the room, yet another couple needles are inserted, yet another couple tubes are connected.

Blood begins to flow though the Mechanical Urinator.

Aaron is on dialysis.

The Urinator works just a little faster than Aaron’s own Lasix stimulated kidneys…with Aaron and the Urinator working together, he gets some breathing room.

A little after midnight, the Cytarabine bag is empty. The poison is finished.

Faith (by Natalie)

I have been learning a lot in the last week about faith. It has been an overwhelming journey full of ups and downs but through it all I have tried to remember that God is controlling all things. Throughout the gospels, there are so many stories about how Jesus healed people out of His compassion because of their faith and for His glory. I am asking God that He would work the same way in Aaron’s life. I am praying for God’s compassion and mercy in this situation–we are His children and His love for us is so great. I am bringing Aaron to God believing that He is the Great Physician and that He can and will heal my husband. Above all, I am giving God glory for all that He has done for Aaron and will do. The important thing that I am learning is that our faith should not rest in the wisdom of men but in the power of God. Through all of the little successes and setbacks, I am praying for a strength that will keep me constantly trusting.

Thank you so much for all of you who have been praying. It is so wonderful to see so many people petitioning our Father on behalf of my husband. Please, continue to pray especially for his lungs to heal and his body to respond well to the chemo. The next few days are crucial in his recovery so keep that in mind while you are praying. I am overwhelmed by how much people are doing for us without me having to even ask: the RV, taking care of finances, bringing food, visiting!, etc. Thank you so much! An especially big thank you to my family for taking care of the kids. I’m looking forward to giving more Praise God reports in the future.

Day 11: Friday, 26 May, 2006

Last night Aaron is double-teamed. Norma and Amelia work swiftly, each attending to different requirements. The Urinator provides Aaron some additional opportunities, which means additional observations, measurements, and adjustments. Aaron and his attendant machines together are a complex system requiring constant adjustments. As with modern, high performance aircraft, there are no stable trim settings. Just as these extreme fighter aircraft are aerodynamically unstable and stable flight is achieved through constant adjustment, Aaron is metabolically unstable and stable life is achieved only through constant adjustment.

Over the course of the day, the Aaron and the Urinator achieve a net loss of about 3 liters of fluid from his body. By the end of the day, the Urinator is outperforming Aaron’s own kidneys by about 3 to 1.

The oxygen supply concentration is gradually lowered to 60-70% and PEEP is lowered little by little to around 10cm. These are much more sustainable values than yesterday’s. With Aaron deeply sedated and paralyzed, the Ventilator is now firmly in control. Aaron’s breath rate is increased to 35 breaths/minute. He may still be lounging on an air mattress, but his lungs are running the ¼ mile. At these settings, his blood oxygen saturation stays in the high nineties. This is a much-improved situation from yesterday.

But the improvements don’t come without a struggle.

It’s not enough that the lungs take in oxygen. They must also get rid of carbon dioxide. The faster breath rate isn’t allowing enough time for the carbon dioxide to escape. The ventilator settings are tweaked to change the pressure waveform: shorten the inhale pressure pulse and lengthen the exhale relaxation time. This helps; the big yellow CO2 value the vitals CRT drops from 100 to 50.

Excess carbon dioxide in the atmosphere contributes to acid rain (as well as perhaps global warming); excess carbon dioxide in Aaron contributes to acid blood. The massive die-off of the mutants also contributes to acid buildup as they decay. Aaron’s pH drops to 7.1 as the acid keeps building. Fortunately, there’s ARM & HAMMER. One of the oldest and truest antacids can be injected straight into the blood. Whether it’s controlling refrigerator odors, baking cookies, or restoring critical acid/alkaline balance, good old baking soda works. The pH is brought to a near normal 7.3.

Aaron doesn’t look quite so bloated by the end of the day.

Pneumonia, never proved but strongly implicated and aggressively addressed with antibiotics, appears no worse.

There is no indication that the lung damage is worse.

His fever has abated.

His vitals are stable.

The constant hum of the machines, the compassionate competence of the staff, and the sublime grace of God give us hope for another day.

Day 12 Saturday, 27 May, 2006

This has been a good day. Only a single crisis, and it was in the wee hours early, when for no obvious reason, Aaron’s oxygen saturation briefly plummets.

It could be related to Aaron’s odd reactions to the paralyzing drug. The Vecuronium doesn’t quite work as predictably as it normally does. A small handheld machine the size of a 1994 cell phone injects a small current into Aaron’s skin, and the muscle twitching in response to the current measures of effective the drug is working. Sometimes, with very little paralyzing drug, Aaron doesn’t twitch at all, which means it’s working very well; it is unwise for the paralyzer to work too well, as paralyzing his heart is not one of the treatment goals. Other times, with a fair amount of paralyzer, Aaron twitches a lot. So it’s hard to predict just how much he needs. As a result, Aaron will intermittently still attempt to breath. When he does so, he overrides the ventilator and promptly gets into trouble, going quickly into oxygen deficit.

Kamela, who is on again today, grows a little exasperated as she attempts to tweak the untweakable. But it’s a small detail compared to the crises of the last few days.

“Pneumothorax” is a fancy word for what happens if a blowout occurs. The high pressure puffs being blown into Aaron’s lungs by the Ventilator risk blowing a hole in the delicate tissue. There is some evidence that that may have happened, so quickly more tests are done. A portable Xray machine is wheeled in again as it has been a number of times over the last few days. The Xray “film” (it’s actually not film…it’s a plate that yields its hidden image directly to the computer without needing chemical development). is slipped between slick surfaces under the air mattress. Aaron does not need to be moved; his delicate balance is not disturbed.

The image shows nothing. False alarm.

Aaron looks better, having lost about 8 pounds of water since the Urinator joined forces with his own kidney to mop up after the carnage wrought against the mutants.

The numbers of his life are better. His oxygen supply is sustainable.

This has been a good day.

Day 13 Sunday, 28 May, 2006

Aaron continues to improve. Dr. Bajaj, who will take a well earned Memorial Day holiday tomorrow, confirms that Aaron’s heart is working more effectively, his lungs are less leaky, his kidneys are working better, and he is regaining acid/alkaline balance on his own. These are all definite signs of improvement.

Aaron is given a brief holiday from the Paralyzer to see how he responds. He quickly demonstrates that he is still not ready to set the pace; his blood oxygen drops as he tries to over-breathe the Ventilator, so he is paralyzed again into submission.

Collateral damage from the slaughter of the mutants has seriously compromised the ability of Aaron’s blood to staunch it’s flow though leaky and damaged blood vessel walls. The mutants are dead, yet they mount a post-mortem attack on still another flank. Their attack is met with a plastic IV bag filled with a viscous, milky-white fluid.

Kim, his night nurse, explains as yet another bag of platelets she is transfusing disappears quickly into Aaron, that platelets, whose job in life is to clot, must be injected rapidly to keep them from clotting on the way into the vein.

Once in, the platelets keep his blood inside the vessels, preventing the vital flow from leaking out into lifeless and impotent puddles.

Ventilator settings of 60% oxygen, 35 breaths/minute, 30% duty cycle square pressure pulses and PEEP of 9 are sufficient to maintain 99% blood oxygen saturation.

Aaron’s 5 quarts of blood continue to flow through the Urinator. Every hour, his blood completes the round trip twice, and every hour, another cup of pale yellow urine drips into the Urinator’s polyethylene bladder; about half a cup more than is going into Aaron from the many life-giving bags constantly being hung on the IV rack.

A broad spectrum of antibiotics keeps infection at bay. The pneumonia is under control…there has been no fever.

Aaron is getting better.

Quickie Update (Rose)

Aaron is doing better today, Sunday, May 28 than he was yesterday- and yesterday was a good day! Healing is taking place.

FYI: The reason this blog was entitled “The 1040 Window” is because Aaron was in room 1040 before he was moved to the ICU. We actually took a picture the 1040 window but it hasn’t made its way on to the blog. For those who don’t know the reference, the 10/40 Window also refers to the countries most in need of prayer which happened to be located approximately between 10 degrees and 40 degree North of the Equater stretching from Africa to China. Anyway, we thought the room number was appropriate. Thanks for all your prayers!