Category: The Initial Trauma

The numbers all say that Aaron continues to improve. He is kept sedated below the level of awareness, but not by much. As testament to his stability, he shares his nurse Akemi with another patient. The Ventilator settings, as do the numbers of Aaron’s life, little by little, trend toward normality. The trend is not monotonic; adjustments are made hourly, tweaking oxygen, volume, and pressure (amplitude, frequency, pulse shape, duty cycle). Some hours, the settings advance toward normal, some hours they retreat. It’s a slow halting process, not unlike a battle between well-matched armies. At any given moment, the picture can look good or it can look bad.

Yesterday, 3 colorful armbands arrived unannounced at our transient encampment in the 4th floor waiting room. John, Debbie and Ashley from New Leads, Aaron’s employer, bear the banded arms, decorated for their contributions to this battle.

Today, a measure of their contributions is utilized as yet another bag of milky, light-gold platelets join forces in Aaron’s bloodstream with Aaron’s own legions of molecular engineers repairing the devastation wrought in the initial onslaught, now 12 days past.

Our gratitude is beyond measure.

On a scale of “Two steps forward, one step back”, today is a 3-step-forward day. The gradual, halting improvements of the last week to which only numbers dared testify blossom today into victories to which even our blissfully lay eyes joyfully testify.

Today, our faith is made sight.

The giver of Aaron’s sleep is withheld after morning rounds, and Aaron begins to awake. Eyes, still swollen and whites bloodshot to solid red, blink, then open. Eyebrows arch in expressive request and in response to questions. Lips move with slight but careful motion; were we adept lip readers we could perhaps understand. Natalie leans close, avows her love, and dissolves in joyful tears as Aaron SMILES! This, we clearly understand.

Pertinent binary questions receive appropriate nods and shakes. Impertinent questions are ignored or dismissed with an eyebrow twitch. Limbs move perceptibly in response to requests. The gagging paroxysms of last week are gone with the endotracheal tube; discomfort and coughing, somewhat harsh, are taken in stride. For 3 hours, the Ventilator allows Aaron’s lungs to work and make all the decisions about how to breathe. The Ventilator provides only assistance, rather than direction. Aaron tires, but does well.

What wonder and what miracle. Shattered, bleeding and bruised, rendered mute for now by the life-giving tracheostomy, vision blurred, body weakened by savage battle, groggy still from powerful opiate, this is unmistakably and wonderfully Aaron.

He comprehends as we tell him of his journey. Anne tells him how near he has been to his sister Celeste, her 11 mortal years having ended 20 years ago. He knows; silent tears flow down his nearly beardless cheeks.

A spiking fever subsides as midnight approaches, and Natalie says goodnight. Aaron mouths a kiss.

This is a very good day indeed.

Praise God! We had a really exciting day here! They reduced the sedation a good deal and Aaron was kind of conscious for most of the day. We’re praising God because, unlike the last time they tried anything like this, Aaron is doing pretty well. They were even able to let him breathe on his own for 3 hours. They started the machine up again but this was really good exercise for his lungs. The most exciting part to me was that he smiled a lot. He gave the biggest smile when I told him about this blog! So, praise God with me for the healing He continues to give.

“Help me, O Lord my God! Oh save me according to your mercy, that they may KNOW that this is Your hand–that you Lord have done it!” Psalm 109:26-27

Today continues yesterday. Good news, and more of it. If we were living in Lake Woebegone, where residents fear too mild a winter might incur Divine notice and the following winter will be extra bitter to even things out, we would be worried. But this is Westwood, where there is no winter. And we have from the start not only welcomed Divine notice, but we have had the audacity to implore Divine scrutiny. It is quite too late to hide.

Aaron did so well yesterday that the CT scan, interminably postponed for 5 days now, is cancelled. (Which goes to show that some things, if ignored, actually will go away.)

Ventilator “weaning” continues, with Aaron doing more of the breathing work. His sedatives (Ativan and Fentanyl) are adjusted up and down, always trending down in this chemical weaning process, seeking the elusive sweet spot between pain and somnolence…between coughing and breathing…between agitation and calm. Weaning…leaving the comfort zone…is not so easy, but it is the path to progress and the way to victory.

Aaron’s eyes not only open, they move slightly from straight ahead. He slowly moves fingers, hands, arms, toes, feet, and legs with purpose and deliberation.

In Aaron’s bone marrow, the stem cells are beginning to recover. 19 days ago, a bone marrow biopsy extracted a sliver of marrow and a chip of bone to assess the enemy and chart the onslaught. Today, another sliver and chip are removed. Tomorrow, the enemy’s position will again be assessed.

Friday

We saw God do a miracle today! When I arrived at 8 a.m., Aaron was in the middle of this horrible coughing fit. Really bad. He was coughing something like 30 times a minute. It was exhausting him. Actually, it was down right exhausting to just watch. The doctors and nurses were at a loss to explain why he was coughing so incessantly. They tried a bunch of things but absolutely nothing helped. The coughing made him shake, made his blood pressure sky high and made him extremely fatigued. He was starting to mouth the words “I can’t do this anymore.” All we could do was pray for him. God knew what was making Aaron cough so badly, no one else did. I prayed that He would make it stop. After 4 HOURS of this coughing, I couldn’t stand it anymore and asked for something to be done, like now. They decided to give him propofol–a sedative that he has been off of for days. This was a step back but anything would be better than what was going on. While the nurse was down the hall getting the medication, a respiratory therapist came in and put Aaron back on the ventilator. (They had taken Aaron off the ventilator and put him just on oxygen hoping that would stop the coughing). The respiratory therapist suctioned Aaron’s trach and inflated the balloon inside. When he did this, Aaron IMMEDIATELY stopped coughing! The nurse got back with the propofol and was floored, “What did you guys do?” I’ll let Ken explain what it was exactly that caused Aaron’s coughing in his post. If you were in that room, you called this a miracle. It was such a dramatic difference. God sent this respiratory therapist in and kept Aaron from having to go back to the propofol. What is also amazing is that while Aaron was tiring a lot from all this exertion, he was oxygenating well. I know my God is in control of all of this. It is awesome to see Him answer our prayers. Keep trusting God and praising Him with me!

“On Him we have set our hope that He will continue to deliver us AS YOU HELP US BY YOUR PRAYERS. Then many will give thanks to God on our behalf for the gracious favor granted us in answer to the prayers of many!” 2 Corinthians 1 :10-11

The coughing began around midnight. As Natalie aptly described, by morning Aaron was becoming exhausted and discouraged. He could barely take 10 breaths between fits of coughing. There was considerable discussion and attempts at resolving suspected culprits, but no success. “Could it be irritation from the trach tube?” we wonder.

The trach tube is a small “L” shaped tube, abut the size of a ½ inch copper pipe elbow. One end of the elbow protrudes from the throat. A soft silicon rubber flange around the protruding end is stitched to the skin of the throat to hold it in place, and a band around the neck further secures the flange so this plumbing bypass will stay put. Around the opposite end of the elbow (which goes down the trachea) is a small, inflatable doughnut…like a miniature inner tube. After the trach tube is installed, the doughnut is inflated, forming an airtight seal between the outside of the tube and the inside of the trachea and forcing all the breath going in and out of the lungs to go through the tube and not through the mouth. It also prevents fluid and gunk in the mouth from dripping down the trachea and into the lungs.

A clever design feature of humans and other creatures makes double use of our breath: From “Freude schöner Götterfunken” to “I wanna hold your hand”, our voice is provided as a second thought by our breath on its way out after servicing the lungs. The trach tube, unfortunately, sidetracks the breath, bypassing the upper throat, so the larynx languishes in breathless silence.

However, if the doughnut is deflated, breath may course along its designed path, and voice is possible without removing the tube. When the doughnut is deflated, fluid and gunk as well as breath may course from the mouth down the trachea.

We ask if deflating the balloon might reduce the irritation. Kamala answers from years of experience that it would make things worse. There seemed to be no solution to the coughing.

Then came the angel from Respiration. Suction around the inner tube, inflate to a higher pressure, and voila, the miracle: no more coughing. Kamala was right about the irritation getting worse if the doughnut is deflated….but no one suspected it might not have been not properly inflated in the first place. A question comes to mind: If your car starts coughing, should you check your tire pressure?

As part of the ongoing weaning, Aaron is completely removed from the ventilator for a couple hours; he does well. He spends most of the day resting and not as responsive as the last 2 days.

The pesky fever returns. Anne and Natalie help Awesome Donna (night nurse with oncology experience) help make Aaron comfortable and cool him the old fashioned, and much more effective than the cold-blanket technotraption, way….wet washcloths.

It works, and by midnight, the fever is gone.

We get no word on the enemy.

On the standard “two step forward, one step back” scale, today was a lateral step perpendicular to the scale.

The plan for continued weaning disappear with last night’s fever. Why does this fever keep returning? Aaron has always been sinus challenged. He also has some implants left over from jaw surgery 10 years ago. Both are possible suspected hideouts for festering infection. So a trip to the B-level basement is ordered “Stat” (fancy word for “right away”), where the GE Light Speed CT scanner waits to render it’s damage assessment imagery. (Which just goes to show that some things that appear to go away, really don’t.) The expeditionary force is re-assembled and the flotilla moves down the hall to the east wing elevators, down the elevator to the B level basement, and into the domain Gilbert, who sits in the CT (abbreviation for “Computed Tomography”, which isn’t fancy for anything. CT is an invention whereby thousands of x-ray pictures made by an X-ray and detector orbiting the patient are deciphered and assembled by a computer into a 3- dimensional image of, for example, the inside of Aaron’s head.) control room adjacent to the hulking Light Speed CT scanner. Aaron and his tangle of attendant life lines are shifted by the flotilla crew onto the narrow table pointing like an arrow toward the center the 8-foot diameter doughnut containing the orbiting x-ray. The moving crew leave the room, Suzy and Oded (nurse and respiratory technician) stand in the control room watching the portable vitals monitor at the foot of the narrow table, Gilbert pushes buttons on his control panel and the table moves Aaron’s head through the doughnut in incremental steps as image slices of his head form in the computer and about a minute later, on Gilbert’s monitor.

Aaron returns to his suite, and is reconnected.

He barely settles in before a neurologist begins a series of tests, which consist mostly of annoying questions and painful pinches. In Aaron’s semi-somnambulance and intermittent intersections with reality (at least reality as we perceive it), he is clearly wanting to please his pain-inflicting taskmaster. But when asked to hold out two fingers, Aaron can only manage to slowly lift a feeble hand a little off the bedsheet. He cannot form two fingers, and his determined grimace yields to tears of frustration.

The damage report, confined only to his head since abdominal damage seems now not to be a concern, returns a couple “Stat” hours later. There appears to be a sinus infection.

And some spots in his brain.

The spots demand another “Stat” trip to the basement. This time, Aaron gets a twofer: another CT and an MRI (which is an abbreviation for “magnetic resonance imaging”, which used to be called “nuclear magnetic resonance imaging”, which is a little more descriptive of the process but the word “nuclear” made people nervous so the marketeers conveniently dropped it).

The results of these damage reports will wait until tomorrow.

The results of the day-before-yesterday’s bone morrow biopsy do not wait.

The mutants are back.

There is an inexplicable exhaustion that ensues from hanging out with Aaron. Perhaps it is the intensity of his struggle, palpable through the sedatives and opiates, that vicariously saps us. Perhaps is the company of the ICU’s transient community, where so much life hangs in the balance so constantly; where the intermittent appearance of an ICU nurse in the waiting room down the hall from the ICU brings a hush to the chatter. ICU nurses do not visit with good news. (Last night, a nurse tells Hector’s mother that Hector is having convulsions.) Perhaps it is knowing that today begins the fourth week of an anticipated one week visit to the ICU.

Or perhaps it is our focus…..sharp, singular, and relentless…..the battle for Aaron’s life. It is odd that we should tire so, for we are more onlookers than warriors in this battle that is waged at so many levels. From the molecules and cells at war inside Aaron, to the army of experts and machines at UCLA, to the conflict in the ineffable realm of the Sacred, we are but cheerleaders and petitioners at best. But we welcome our small part standing on the sidelines, and we are fortified by those who stand with us.

The spots in Aaron’s brain appear to be small hemorrhages, most likely due to his ongoing deficiency of platelets. Dozens of tiny probes with thin protruding wires are taped to Aaron’s fast-approaching-bald head, giving him the look of science experiment gone awry. The results of the EEG suggest that the bleeding is benign for now.

A good part of the day is used up changing catheters and various lines as a preemptive strike against infection. The NG tube is removed so as to not aggravate the sinus infection, and an OG tube is inserted

The fever dances its daily on-again off-again jig.

Toward late afternoon and into evening, several hours of coughing, vomiting and diarrhea keep us out of Aaron’s room (Nurses don’t like us to see this messy side of their job.), give us a focus for immediate concern, and keep at bay the nagging knowledge that the mutants are again growing inside Aaron, and gaining in strength of numbers for another battle in a war that is far from over. We plead that Aaron will gain strength faster.

Everytime I think about what everyone is doing for us I am completely overwhelmed. I greatly appreciate everyone who is praying. It is a great comfort to know that so many are turning their eyes upon Jesus and trusting Him with Aaron’s health. I appreciate everyone who keeps up with what is going on with Aaron by being a part of this blog. I am grateful for everyone who drives all the way out here to visit even though it is a long drive and the traffic can be frustrating. Each visitor has been a great encouragement to us. Thank you so much to those of you who have donated platelets–what an incredible thing to do! So many of you have sent cards, called on the phone, brought snacks/dinner, donated money and offered help. There is also an enormous amount of people doing HUGE, specific things that are unbelievably generous. In fact, I know that we are not even aware of everyone who is helping us out or things that are being done. From the entire Boydston Family, thank you from the bottom of our hearts. It is so wonderful to tell Aaron, in his half awake state, that he doesn’t need to worry about anything–there are so many people helping to take care of all the details. We have truly been blessed by God to have each of you as friends and family.

Above all, I would like to publicly give thanks to God for all He is doing in our lives and your lives, as well. He has proved Himself worthy of our trust. My faith and reliance on Him has been strengthened in this trial. I continue to see His hand in this entire situation and I know He is controlling everything. This week I am especially thankful that God has protected Aaron’s brain. You know, for a couple of days there, the doctors were suggesting that the stuff they found from the CT scans and MRI could be lymphoma. We were praising God big time this week when we found out it was only minor bleeding.

So, I’ll close with another huge THANK YOU for all that you are doing and continuing to do. Don’t forget to keep praying for Aaron! 🙂

A pattern is emerging over the last few days: Aaron sleeps peacefully, with the numbers of his life in reasonable bounds. (Except the cursed dancing fever that taunts us with its daily jig). The Ventilator’s service is now perfunctory. It’s life-giving sophistication is not much required; a little extra oxygen and pressure is about all Aaron needs to breathe well.

Then the giver of sleep is reduced, and Aaron begins to awake. The more aware he becomes, the more he coughs. Perhaps the cough is triggered by the trach tube worrying his trachea. Or it may be the mucous font that seems be gushing more freely these last couple days. Neither local application of numbing Lidocaine nor the miracle of trachea-suction/doughnut-inflation seems to stop the coughing. Then the vomiting starts and Aaron cleaned and mercifully returned to his peaceful slumber.

Is this a weird Catch-22? Must have the trach to awake, but cannot awake with the trach?

We shall see if tomorrow brings a solution.

We shall also see if it reveals a strategy for the coming battle, about which we learn nothing today.