Date: Thu, 31 Jan 2002 11:00:44 -0800
From: D S <denis141@hotmail.com>
Subject: ALONE/TOGETHER- Chapter 22 ~ ANNUS MIRABILIS, Part Three: To Fall.
I've been working on this chapter, on and off, for a while (and thinking
about it for even longer). It was difficult to write (in every sense of the
word) and, I should warn you, it's intended to be difficult to read - not in
the sense of being a challenge to understand or follow (like the Absalom,
Absalom chapter, for example), but because the subject matter is stark,
emotional, and horrific - and presented in those terms. Or it seems so to
me. I won't say that I hope you enjoy what follows, but I do hope you find
it moving. Oh, and one more thing: for you sharp readers out there, yes,
yes, yes, something occurs in this chapter that is, in fact, inconsistent
with an earlier chapter. In the end, there was no way to avoid it. As a
result, I will probably rewrite the earlier chapter one of these days. In
any case, if you would be kind enough to let me know what you thought of
this chapter, you can write me at: denis141@hotmail.com.
DEDICATION: This chapter is dedicated to the hundreds of children who have
during the last decade endured the ordeal described below. It should happen
to no child, but sadly it does - too often.
DISCLAIMER: I don't know any member of NSYNC, and this story purely a work
of fiction. This story also contains male-male sex (albeit mostly implied),
so, if that's not your thing, or if you aren't old enough to read such
things, you should stop reading now.
CHAPTER 22: ANNUS MIRABILIS ~ Part Three: To Fall.
1
DESPAIRING cries float ceaselessly toward me, day and night,
The sad voice of Death-the call of my nearest lover, putting forth, alarmed,
uncertain,
This sea I am quickly to sail, come tell me,
Come tell me where I am speeding-tell me my destination.
2
I understand your anguish, but I cannot help you,
I approach, hear, behold-the sad mouth, the look out of the eyes, your mute
inquiry,
Whither I go from the bed I now recline on, come tell me;
Old age, alarmed, uncertain-A young woman's voice appealing to me, for
comfort,
A young man's voice, Shall I not escape?
--Walt Whitman, Despairing Cries, Leaves of Grass (1900).
JULY 29, 2007
When the sound of Aaron loudly crying at one in the morning woke Lance from
an otherwise untroubled sleep, there was no way for him to know that his
life would soon be changed forever. Pulling on his boxers shorts, and then
shuffling down the hall toward Aaron's room, Lance didn't worry or wonder or
imagine that something might be wrong. He assumed that Aaron had had a bad
dream, or been startled by a noise outside, or had maybe wet his bed. All
of these things had happened before, and Lance had no reason to think that,
on this night, the situation he'd face upon walking into Aaron's room would
be in any way different. But it was.
"Hey there, big guy," Lance said, bending to lift Aaron up from his bed.
"What's this all about, huh?"
As soon as Lance lifted him up and into his arms he smelled sharp foul
fecal smell of Aaron's dirtied underpants. Aaron had never done this
before.
"Looks like you had a little accident, huh?" Lance said.
Aaron continued to cry loudly as Lance carried him into the bathroom. He
flipped the light switch on with his elbow. Aaron's once-white underpants
were brown now and soaked through and squishy like a fetid swamp. Lance
stood Aaron in the tub and pulled his t-shirt up over his head and removed
his dirty underpants. The sharp smell of it made him gasp and hold his
breath; and Aaron's crying was more like screaming now, and he wondered if
he should get JC to help him.
"I know, I know," Lance said, trying to reassure him, and kissing his
cheek.
Lance turned on the water and adjusted its temperature until it was warm
enough. The showerhead was detachable and it was connected to long flexible
metal tube. Lance stood up and detached the showerhead and then flipped the
metal switch that redirected the water from the faucet. As Aaron continued
to scream, Lance washed him with warm water and baby soap and then quickly
wrapped him in a fluffy white towel.
"Come on A," Lance whispered into Aaron's ear, kissing it repeatedly as he
held him tightly to his chest. "It's going to be all right."
And believed it would be.
* * * * *
"Josh," Lance said, using his foot to jostle the bed. "Josh, wake up."
JC opened his eyes and slowly sat up in bed, looking around the room as if
he was trying to figure out where he was. He looked at Lance for several
seconds, alternately blinking and squinting and shaking his head. Lance was
holding Aaron in a large bath towel, and only his head was visible as he
pressed him to his chest, rocking him gently back and forth. JC couldn't
tell if Aaron was asleep, but he knew he wasn't crying.
"What's going on," JC said, his voice hoarse from being asleep.
"I need you to call Melanie," Lance said. "There's something wrong with
Aaron."
"What do you mean?" JC said, getting quickly out of bed. "Is he sick?"
"I think so," Lance said. "He's had really bad diarrhea all night, like
six times."
"Oh my god," JC said, gently rubbing the top of Aaron's head. "Poor guy."
"Yeah - I don't know what it is. The flu maybe. Like some virus or
something."
"Probably," JC said. 'I mean it can't be anything too serious."
"I hope not," Lance said. "But I think we should call Melanie anyway."
"No, you're right," JC said, picking up the phone from beside the bed and
dialing her number. "She won't mind."
Lance sat down on the edge of the bed and watched JC walk back and forth
across the room waiting for Melanie to answer. Lance's neck and upper back
hurt from having held Aaron for the last three hours, listening to him cry
for most of it, until the little boy had finally become too tired to cry
anymore. He had never seen Aaron cry so hard before and it made Lance feel
sick to his stomach thinking of it.
"Hello," JC said. "Melanie? Yeah, it's me, Joshua. I'm really sorry to
wake you, but Aaron is sick, and we're kind of worried about him, and wanted
to call - you know, to find out what you thought. Right. Well, Lance said
that he's had really bad diarrhea all night, like six times."
"What color was it?" JC said, turning to ask Lance.
"It was," Lance said, closing his eyes as if trying to better remember it.
"I don't know, like..."
"Wait," JC said, interrupting Lance. "Let me put her on the
speaker-phone."
"Melanie?" JC said, after pushing a button on the telephone's base and
returning the hand-set to its cradle. "Are you still there?"
"Yes," Melanie said, her voice sounding tinny and faraway. "I'm still
here."
"Okay, good," JC said. "I put you on speaker-phone so Lance could hear
too."
"That's fine," she said. "Hello Lance."
"Hi Melanie," Lance said. "Um, it was kind of green-brown, sort of like
the color of mulched grass. But the last two times, it was more like muddy
water."
"Did he seem to be in pain?"
"Yes," Lance said. "He was crying really hard. I couldn't get him to
stop. And he kept saying his stomach hurt."
"How is he now?" Melanie asked. "Is he still crying."
"No," Lance said. "He's not crying now. But I think it's because he's
exhausted. He's sleeping."
"How's his color? Is he ashen or pale or what?"
"What do you think Josh?" Lance said, pulling the bath towel further down
from where it partly obscured Aaron's face.
"I don't know," JC said. "He's a little pale, but not too bad. He's got
color in his cheeks."
"All right," Melanie said. "Now I want you to look at the back of his hand
and pinch a small amount of skin between your thumb and forefinger. Then
quickly release it and see if the skin stays pinched or smoothes back out."
"Okay," Lance said, taking Aaron's arm from inside the towel and then
looking at JC. "Josh, can you do it?"
"Sure," JC said, crouching down and doing as Melanie had instructed.
"It stayed pinched," Lance said.
"That means he may be dehydrated," Melanie said. "Do you have any
Pedialyte?"
"Do we?" Lance asked, looking up at JC, his face clouded with worry.
"Yes," JC said. "I have a case of it in the basement."
"Great," Melanie said. "Get him to drink as much of it as you can. It's
important that he stay hydrated. And go ahead and bring him in tomorrow,
sometime around noon, so I can examine him - all right?"
"We will," Lance said. "Thanks so much, Melanie."
"It's really no problem," Melanie said. "That's why I'm here. And be sure
to call me if his condition worsens in any way."
"We will," JC said. "And thanks again."
"You're welcome," Melanie said, hanging up.
Lance and JC said simultaneous good-byes and then JC switched off the
phone. It was five-thirty in the morning. Lance's eyes were puffy and red,
and it looked almost as if he was about to cry. JC walked over to where he
was sitting on the bed and kissed the back of his neck and rubbed his
shoulders.
"I'll go get the Pedialyte," JC said. "Then I'll take over for a while.
You need to get some sleep."
"No," Lance said. "I'm fine. Really."
"No you aren't," JC said. "And I mean it. You need to get some sleep."
"All right," Lance said. "I'll try."
"Good. I'll be right back then."
* * * * *
Lance woke up and looked at the clock next to the bed. It was five past
nine. As he sat up a sharp pain ran down the back of his neck and radiated
across his left shoulder. He thought about taking some ibuprofen, and he
wondered if there would be any in the medicine cabinet. Probably. Standing
up, Lance walked slowly into the bathroom. His feet felt heavy and his legs
numb. Standing over the toilet, he pulled his penis through the opening in
the front of his boxers and began to urinate. He needed a shower, and
wanted to shave and brush his teeth, but first he wanted to see how Aaron
was doing. Lance shook the urine off the end of his penis, tucked it back
into his boxers, flushed the toilet, and went to look for JC.
Aaron was asleep in JC's arms, and both of them were curled up on the couch
in the music room. Except for the fact that they were not in bed, sleeping
where they usually would, nothing about this scene seemed unusual or even
unexpected. Lance felt reassured finding them there - asleep and seemingly
at peace. He decided to leave the two of them undisturbed for now while he
showered and shaved. As he was about to leave the room, Lance heard someone
stir behind him, and he quickly turned. It was Aaron, and he looked like he
was about to start crying again. Then he did.
JC woke up immediately. He stood up and nearly ran into Lance as he exited
the room and headed toward the bathroom.
"Is he still going?" Lance called after JC, following him.
"Yeah," JC said, walking quickly now. "But not so bad as before."
Lance stood in the doorway to the bathroom and watched as JC lowered Aaron
on to the toilet. He was still wrapped in a bath towel and JC was careful
to pull it out of the way so that Aaron wouldn't soil it. Crouching in
front of Aaron, JC looked into his boy's eyes and smiled at him and held his
two small hands together in his own, and kissed the tips of each of his
fingers.
"Does your tummy still hurt," JC asked him softly.
Aaron nodded his head and continued to whimper. JC could hear the sound of
liquid leaking into the toilet and he waited for it to stop. When it did,
JC cleaned Aaron with a moist washcloth and then wrapped the bath towel
fully around him again.
"Can you flush that?" JC said, looking at Lance, and trying to smile.
"Sure," Lance said, stepping past JC and reaching for the toilet handle,
but then stopping.
"Oh fuck," Lance said. "It's blood."
* * * * *
Justin had called Melanie from the car on the way to her office, but she
told them to meet her in the emergency room instead, at San Diego Children's
Hospital. It was now six hours later, and Lance and JC were sitting on
plastic folding chairs on each side of Aaron's hospital bed. They were
watching him as he slept and listening to the slow monotonous drip of the
intravenous saline being fed to him through a vein on the inside of his left
arm. Lance had pulled the blinds closed and the only light in the room was
that which leaked through the open door from the hallway. JC looked up and
saw Melanie enter the room and signal them to come out into the hall.
"Lance," JC whispered, startling him. "Mel's here."
"Oh, right," Lance said, his voice weak and drained of all inflection.
Once out in the hallway, Melanie looked at each of them in turn and then
began to speak. Her voice was quiet, nearly conspiratorial, but full of
authority too, without any trace of uncertainty or fear. Although it was
relatively noisy in the hallway, neither JC nor Lance could hear anything
other than Melanie's voice as she spoke to them.
"I've just been speaking to Dr. Suchida. She's the pediatric
gastroenterologist on-call today. She tells me that Aaron's lab tests are
back."
"What's wrong?" Lance and JC said, nearly in unison.
"Now, listen to me," Melanie said, her voice becoming stern. "You need to
try to relax a little. I know that's difficult, but you are not going to
understand any of if this if you're both in a frazzle. All right?"
"All right," Lance said, taking a deep breath and reaching for JC's hand.
"Aaron has hemorrhagic gastroenteritis, which means his intestines are
inflamed and bleeding. That's why his stool became grossly bloody like it
did."
"But what caused it, this thing he has," JC asked, looking back and forth
between Lance and Melanie.
"We can't be certain as of yet," Melanie continued. "However, his stool
culture tested positive on a presumptive basis, for the presence of a
pathogenic bacteria, E. coli O157:H7. Confirmation will take another 24-48
hours, but the presumptive test we use these days is quite accurate, so I
suspect it will be confirmed."
"Then what?" Lance said.
"This kind of infection is usually self-limiting" Melanie said. "So we'll
provide supportive care, mainly making sure he remains hydrated and
well-nourished. There's really nothing else we can do except to wait for it
to run its course."
"He's going to be fine then," JC said, his shoulders slumping as his whole
body visibly relaxed. "He'll get better."
"He should be fine," Melanie said. "But we're going to keep him here a few
days so we can monitor his course. So you'll need to be patient."
"But what about his pain," Lance said, his voice wavering as he tried to
keep it under control. "He wakes up screaming."
"You have to understand that giving him pain medication will only prolong
the acute symptoms by reducing peristalsis -wave-like contractions that the
intestines use to rid the body of waste and, in this case, toxins. Were we
to give him pain medication, we would increase the likelihood that toxins
enter his bloodstream. And we don't want that."
"All right," Lance said. "I understand."
"It's just so hard to see him in such pain," JC said, gasping unexpectedly,
as if someone had knocked the breath out of him, and then started to cry.
"I know," Melanie said, watching Lance pull JC into his arms and hold him.
AUGUST 1, 2007
JC's Journal: Today was good. It feels like things are finally starting
to look up and the worst is over. Aaron went almost the whole day without
any cramps or crying and his diarrhea finally stopped. He hates being here,
which is not too hard to understand.
Mel said that he'll probably be discharged tomorrow if his blood tests come
back okay. Lance has to leave the room when they draw blood because he
can't stand to see it, and nearly fainted the one time he tried to watch. I
hold Aaron when they do it, and try to distract him, but he knows what's
going on, and he's too smart to be fooled. He doesn't cry though, and I
think that's what kills me the most - him being brave like that, braver than
me, and he's not even four years old.
Nursing Notes: Patient appears happy and without obvious pain. He is alert
and attends to instruction. Blood was drawn and IV removed, both without
problem. Pulse, breathing, and blood pressure all normal. Awaiting test
results from lab. To be discharged tomorrow on orders of Nancy Suchida,
M.D. Signed and authenticated, DS
* * * * *
"Hey, hey A," Justin said, bounding into the room and waving at Aaron.
"Hi Uncle J," Aaron answered, his voice subdued and noticeably weak.
"Hey Justin," JC said, standing up from where he'd been sitting on the edge
of Aaron's bed, reading to him from one of the several picture books he'd
brought back with him from the house. "When did you get into town?"
"Just now," Justin said, the cheerfulness in his voice beginning to sound
forced. "I had to come hang with my main man here. So how you doing Big A?
Everything cool?"
"I want to go home," Aaron said.
"I bet you do," Justin said, surprised by the directness of Aaron's
statement.
"Josh?" Aaron said, leaning back against his pillow. "Can I sleep now?"
"Sure," JC said, pulling the blanket up under Aaron's neck and kissing him
on his forehead. "You go to sleep, and Justin and I will be here when you
wake up."
"Okay," Aaron said.
"I love you, A," JC said, kissing Aaron again.
"You too," Aaron said, closing his eyes but then suddenly opening them
again. "Wait. Is Lance being here too?"
"Yes," JC said, gently smoothing Aaron's hair. "He'll be right here too."
"Okay," Aaron said, leaning back into his pillow and closing his eyes once
more.
* * * * *
As Lance walked up the hall toward where JC stood speaking with Dr. Suchida
he could tell from the look on JC's face that something was wrong and it
suddenly felt as if someone had punched him hard in the stomach. He could
hardly breathe and his forehead was immediately covered in sweat.
"What's wrong?" Lance asked, his voice catching in his throat.
"This is Dr. Suchida," JC said, grabbing Lance's arm.
"I know," Lance said, impatiently. "What's wrong?"
"The results from Aaron's most recent lab tests just came back," Dr.
Suchida said.
"All right," Lance said. And?"
"And Aaron's blood tests show an elevated serum creatinine level. He also
has a slightly low red blood cell count."
"What does that all mean?" JC asked.
"The red blood cell count may indicate he's becoming anemic. More
troubling is the elevated serum creatinine, which may suggest a gradual loss
in kidney function."
"What?" Lance said, his voice louder than he realized. "You mean his
kidneys aren't working? How can that be?"
"No, that's not what I said," Dr. Suchida said, speaking sternly, and
lowering her voice as if to compensate for how loudly Lance had spoken.
"His kidneys are working. And so long as he continues to produce urine, we
can assume it's nothing serious. But I called in a pediatric nephrologist
for a consult, just to be on the safe side. He should be able to tell you
more once he's had an opportunity to examine Aaron."
"Does he still get to go home tomorrow?" JC asked.
"I don't know," Dr. Suchida said. "We'll just have to wait and see."
August 2, 2007
JC's Journal: Aaron didn't get to go home today, which made him cry for the
first time in two days. It was horrible. I had to leave the room because I
started crying too, and I didn't want him to see me. Lance stayed with him,
and Justin took me down to the cafeteria for coffee. We talked to Dr.
Roberts. He's Aaron's kidney doctor. He's a no-nonsense guy, and not
really friendly but he seems to know what he's talking about. He told us
that it was just a 'watch-and-wait' thing now, and that we should hope that
Aaron doesn't develop something called hemolytic uremic syndrome (which I
can spell only because Lance made the doctor write it down). Dr. Roberts
was also worried about the low red blood cell stuff and told us that Aaron
might need a transfusion. Lance came unglued when he heard that. This is
so hard on him, and on me too. I just want Aaron to be okay. That's all I
ask, and it's all I care about right now.
Nursing Notes: Patient is resting comfortably. Both parents in room,
notably anxious and questioning. Fluid intake remains normal, but appetite
decreased. Discharge on hold for now. 10cc of blood obtained without
complication. Breathing, pulse, and blood pressure normal. Temperature
elevated at 99.8 F. Signed and authenticated, DS
* * * * *
The four of them stood in a tight cluster just outside the door to Aaron's
hospital room - Melanie, Justin, JC, and Lance. Lance had his arm around
JC's shoulder. JC was biting his lower lip and looked as if he was in
shock. Justin stared into the empty Pepsi can he was holding and tapped the
sides of it with his index finger. Melanie watched Dr. Roberts walk away
down the hall. He had just updated them on Aaron's condition.
"I don't know what to say," Lance said, shaking his head slowly from side
to side, his voice a flat and stunned monotone. "This...this - it's just
too much. He was doing okay. He was supposed to go home today. And now
they're moving him to the intensive care unit. And he need's a blood
transfusion...and, and..."
"Let me donate the blood," Justin said, blurting the words out. "I'm
B-positive, just like Aaron. Please let me do it."
"It's not necessary," Melanie said, speaking softly and touching Justin's
forearm. "I'm sure they'll have compatible blood on hand."
"No," Justin said, stomping his foot. "He shouldn't have some stranger's
blood in him. It's not right."
"Justin," Lance said, looking at him but not really seeing him, his vision
clouded by the anguish he felt. "You don't have to do that. Really."
"No," Justin pleaded. "I want to. Please. I want to do something to
help."
"Let him," JC whispered, almost inaudibly, his head resting on Lance's
shoulder now. "If he wants to. It's okay."
"That's fine," Lance said. "Sure."
"Can you show me where to go?" Justin asked, looking at Mel.
"Of course."
"Thank you," Lance said loudly as he watched the two of them walk away.
"I'm going to get Aaron's stuff together before they come to move him," JC
said.
"Okay," Lance said, taking his arm from around JC's shoulders. "I'll help
you."
AUGUST 2, 2007
JC's Journal: Aaron's in the pediatric intensive care unit now.
There's not much privacy because the nurses are in and out constantly. Poor
Aaron has his IV back in and he hates it. He keeps asking me to take it out
and it just kills to keep telling him that I can't. Then he says, "But it
hurts" - and it takes all I can do to not fall apart. I try to keep him
distracted by reading to him, or letting him play his Gameboy, but nothing
helps for long. He knows he's somewhere he doesn't want to be and you can
tell it makes him sad.
Melanie's been great about explaining what's going on. Aaron's kidney
doctor, Dr. Roberts, is lousy at it. He assumes you know what all the big
words mean and so half the time he might as well be talking in German or
something. It's frustrating, especially for Lance, because he hates it if
he doesn't understand something, and doesn't feel in control. This
afternoon he yelled at one of the nurses and he wouldn't let her change the
bag on Aaron's IV until she'd explained what she was doing and why. Justin
is bringing Lance his laptop from home tomorrow morning so that he can look
stuff up on the internet. I don't know if that will make things better or
worse for him.
We're still waiting to see whether Aaron develops HUS. Melanie explained
what it was, but the main thing I remember - or can't forget - is that she
said "There's no therapy to halt its progress." So I pray to God he doesn't
get it. It's bad enough as it is. I don't know if I can stand it being any
worse.
Nursing Notes: Patient no longer producing a normal amount of urine,
despite IV fluids for a full day. Probable oliguria. IV fluids
discontinued and oral intake of fluids restricted. Blood tests show
doubling of serum creatinine levels. Platelet counts also low. Consent for
transfusion obtained from both legal guardians. Transfusion was started at
1900 hours, and is ongoing. Signed and authenticated, DS
* * * * *
The sky looked like a seamless expanse of silver-gray silk pulled taut
across the horizon. The sun had disappeared an hour earlier and it looked
like it might rain. Lance stood at the edge of the hospital parking lot.
His hands were clenched into fists. His fists were pressed against his
temples as if he was trying to crush his head between them. He could smell
the sour sweat that clinged to the clothes he'd worn for the last two days
now. His mouth was dry and his lips were chapped. People who he didn't
know walked by him on the way to their cars. He hated them for being able
to leave, being able to drive away, to go home, and to be rid of this
hellish place. He'd just found out that his little boy had HUS.
* * * * *
Justin stood at the window, watching Lance stand in the rain. He'd been
out there for nearly an hour now. Just standing there, with fists pressed
to his forehead. It looked as if he was screaming at the sky. It was
chilling to see, and it made Justin shudder.
AUGUST 3, 2007
JC's Journal: I spent the morning calling everyone, giving them the bad
news about Aaron, and asking them to pray for him. I called Lance's Mom
last, because I knew I'd cry talking to her and that I'd never be able to
make any more calls after that. She asked how Lance was doing, and I didn't
know what to say, because I can't really tell how he's doing - or how I'm
doing, for that matter. Like I said to him last night, while we were
sitting with Aaron, it's just about getting through this now, because
there's no time or energy for anything other than that. We just need to
keep kicking our feet and hope we can make it to shore before our strength
gives out.
Nursing Notes: Patient underwent the placement of a right femoral
catheter. Placement done to make it easier to obtain blood samples,
administer medications, and to provide transfusions. Once the catheter was
in place, patient received a transfusion of platelets for treatment of
thrombocytopenia. Urine production has stopped. Blood test show creatinine
and blood urea nitrogen (BUN) levels both markedly elevated. Signed and
authenticated, DS.
* * * * *
Dr. Roberts was seated in the waiting room speaking to JC and Lance. It
was a long rectangular room that contained two long couches, and three
overstuffed chair, all upholstered in burgundy velour. There were stacks of
old magazines on several of the side tables, and two brass floor lamps. The
only other light in the room came from an overhead fluorescent light that
made a harsh buzzing noise.
"Aaron is now anuric," Dr. Roberts said, continuing with his explanation of
Aaron's condition. "Which means that he's stopped producing urine. This
could be a temporary set-back, just a blip in renal function. Or, more
seriously, it could mean that's he's progressing into kidney failure."
"Kidney failure?" JC said, whispering the two words, as if speaking too
loudly might make them true.
"What happens then," Lance asked. "If it's kidney failure."
"He'll need to be put on dialysis," Dr. Roberts said. "Otherwise he'd die
as his system is flooded with the waste that the kidneys ordinarily remove
from the blood."
JC stood up and walked to the far end of the room and leaned his forehead
against the wall, and then his hands too, as if he was trying to push it
over and flee. His legs were shaking as he pushed against the wall, and
seeing him Lance feared he might collapse. Lance walked up behind him and
put his hands on JC's shoulders.
"Josh," Lance said. "Come sit down. Please."
"Yeah, okay," JC said, taking a deep breath and sitting back down next to
Lance. "I'm sorry Doctor."
"No, it's all right," Dr. Roberts said, speaking in calm, well-practiced
tones. "This is always difficult news to receive."
"So how does it work," Lance asked. "The dialysis."
"With a child of Aaron's age, peritoneal dialysis is indicated," Dr.
Roberts said. "We'll need to insert a second catheter, this time into his
abdomen."
"Oh Lord," Lance said, clutching his stomach.
"We'll do it under general anesthesia," Dr. Roberts added. "He won't feel
it, at least not its insertion. Then, once the catheter is in place, we'll
dialyze him, probably once daily until kidney function returns."
"When will that be?" JC asked.
"Impossible to predict. It can range from one day to thirty."
"But what if it doesn't return?" Lance asked. "What then?"
"We'd have to consider a transplant," Dr. Roberts said, lowering his voice.
"I assume you're in contact with Aaron's biological parents, since they
would be the most likely compatible donors."
"No," Lance said. "His biological parents are dead."
"I see," Dr. Roberts said. "Well, that's not our only option and, besides,
kidney function returns in approximately ninety percent of the cases."
"What about other complications," JC asked. "I mean, can this..."
"Yes, it can be fatal," Dr. Roberts said, anticipating the question. "But
typically it's not. The fatality rate is only five percent."
"But you said there was only a five percent chance of him developing HUS,"
JC said, his voice angry and confused. "So how much comfort is that
supposed to be?"
"I understand your anger," Dr. Roberts said, smoothly. "I do. I would
be angry to if it was my son. But all I can do is provide you with as much
information as I can. I cannot predict the future, and I would by lying to
you if I said I could."
"We know that, Doctor," Lance said, standing up and shaking the doctor's
hand. "And we appreciate you taking the time to explain this all to us.
Thank you."
"Yes, thank you," JC said, standing up now too.
Lance and JC walked slowly back to Aaron's room and found that he was
asleep. Looking at his face alone, and the gentle curve of his lips, and
loose curls of his light brown hair falling wave-like across his forehead,
Aaron appeared almost normal, almost healthy, almost perfect. But it was
this incongruity, between appearance and reality, that was - at that moment
- so difficult for Lance and JC to understand or endure. Because the
reality of the catheters and the IV fluids and the hospital bed and
antiseptic smell that defined this place was undeniable; and it denied them
solace, and robbed them of words. So standing there, terrified of what else
the future might hold for them, they knew there was no safe shore to which
to escape, and there only hope was to be found in courage.
AUGUST 4, 2007
JC's Journal: This morning Aaron went into surgery. Seeing Aaron wheeled
on that gurney, through the door into the operating room - it was the
hardest thing I've ever had to watch. At least for about two hours it was,
because later that afternoon was his first dialysis session. Aaron was
terrified. He cried the whole time and was screaming "Daddy, no! Daddy, no!
Make them stop. They're hurting me" while Lance had to hold him down to the
bed. I thought I was going to die.
Nursing Notes: Second IV line inserted in left femoral artery to
provide Total Parenteral Nutrition. No urine production. Hemolytic anemia
noted. Platelet count still low. Second transfusion ordered. Stool culture
confirmed positive for E. coli O157:H7. State Department of Health
notified. Signed and authenticated, DS.
* * * * *
Lance and JC were together in bed for the first time in seven days.
Melanie had insisted that they go home for the night, promising to stay with
Aaron herself, and to call them if he woke up, or if anything else happened
at all. It was ten o'clock.
"Josh?"
"Yeah?"
"Do you..."
"Yes."
"It's not wrong, is it?"
"No."
"Because I really want to."
"I know. Me too."
JC slid slowly up to where Lance lay on his back and then crawled on top of
him so that his body was stretched the length of him. Interlacing his
fingers with Lance's fingers, JC kissed him, opening his mouth and
immediately felt the plunge of his tongue. Wrapping their arms around each
other, they began to rub furiously against the flesh of the other, as if
trying for as much contact as possible. They did not notice the loudness of
their moaning gasps, but it was louder than it had been before; it was an
unbridled noise, and raucous, and full of sobs now too, as each was overcome
by orgasm and anguish at the same time, clinging together, in the throes of
both, coming together, then, without moving, falling deeply asleep.
AUGUST 5, 2007
JC's Journal: This afternoon, I fell asleep in one of the chairs in
Aaron's room. When I woke up, Lance was sitting on the floor in front of me,
leaning against my legs. He was still asleep, and was holding my legs so
tight that my feet were numb. His face was on my lap too. I don't know why
he'd gotten out of his chair, but I was glad he had, and was there with me
when I woke up.
Nursing Notes: Patient is stable, but otherwise notably unimproved.
Significant for pallor and lethargy. White blood cell count climbed sharply
over night. Temperature is now 101.6 F. More blood tests ordered. Dr.
Suchida prescribed vancompcin and tobramycin. Signed and authenticated, DS.
* * * * *
JC had brought the double wedding-ring quilt from home and tucked it around
Aaron even though the nurses said it might get blood-stained. "Are you
sure," they'd said. "It's so beautiful and it'd be horrible if it got
stained."
"No," JC said. "It needs to be here."
AUGUST 6, 2007
JC's Journal: This is the worst. He doesn't look like Aaron anymore.
Not at all. The press is all over, and I had to go downstairs to meet with
hospital's communication director, who wants us to issue a statement of some
kind. I suggested that the statement say "Leave us the fuck alone," but he
didn't think that was very funny. I finally told him that Lance's manager
would take care of it.
When I got back to Aaron's room, and I walked up to his bed, I thought
I was in the wrong place. Then I finally recognized him and I started to
cry. He was swollen up like a balloon, and his skin had turned the color of
butter-scotch candy. I was almost afraid to touch him because I thought, if
I did, he might burst. Seeing him like this, I wondered if we would ever get
Aaron back, back like he was before. I know that I'll never be the same
again. I hate this so much.
Nursing Notes: Blood tests showed marked increase in amylase and
lipase levels. Temperature 102.5F. Antibiotic therapy continues.
Breathing rapid and labored. Patient in obvious discomfort. Signed and
authenticated, DS.
* * * * *
As JC stared at it, he tried to remember when he'd last eaten Jell-O. He
knew he'd never liked it, even when his Mom - when she was still alive - had
slathered it in Cool-Whip. Now he just watched it jiggle, the movement
caused by the people walking by the table at which he and Lance sat holding
hands, unable to eat even one bite of food. Justin lurked at the edge of
the room, waiting for Melanie to arrive; and when she did, he led her to
their table and sat down with her. Neither JC nor Lance looked up.
"They've called in another doctor," she said. "An endocrinologist."
"A what?" JC said, slapping the table and nearly knocking over his milk.
"An endocrinologist," Melanie said. "Aaron's lipase and amylase levels
are... well, his pancreas is not functioning normally. It's inflamed. This
is...it is...uh, well - it's expected sometimes, with HUS. And,
unfortunately, it's quite painful. So, we may need to sedate him. You see,
the idea would be to induce a kind of coma so he's not in such pain. It
will make the dialysis easier too, and less traumatic."
Lance stood up. Then JC too. Justin - without giving any thought to it -
took Melanie's hand in his own and squeezed it tightly. Two people standing
in line to pay for their food swung around to stare as Lance and JC standing
there. It was as if everyone in the room knew that something was about to
happen. And then it did.
"But what if he doesn't wake up?" JC said, suddenly shouting. "What then?
Or are we just supposed to say good-bye now - you know, just in case, and
then let you put him to sleep like he's some fucking animal."
"No," Melanie said, her voice jagged and raw. "That's not it."
"That's not what she meant," Justin said, cutting in angrily and grabbing
Lance's arm. "It's not what she meant. For Christ's sake, Lance - she's
your friend."
"Fine," Lance said, gritting his teeth together. "I know that. And I'm
sorry Mel. But we just can't say good-bye to him, not like that, not just in
case."
"No. And we won't say good-bye either," JC said, shaking his head, and
staring at Melanie as if she had just spit on him. "And don't you dare tell
us we should. We are NOT letting him go. And I swear I will kill anyone who
tries to make us!"
"Josh," Lance whispered, fiercely pulling free of Justin's grip and moving
toward JC who was seemed so frantic he feared he might hurt himself. "Calm
down."
"NO!" JC screamed. "I won't calm down. I'm tired of being calm. And I'm
tired of being patient. And I'm fucking sick and tired of everyone telling
me 'Josh, you just have to wait and see.' Well - I don't want to wait and
see anymore. I want Aaron back! And I want to take him home! And I want
things to be like they were before!"
Melanie and Justin and Lance watched as JC kicked over two chairs and threw
his bowl of Jell-O against the wall. The small glass bowl that had
contained it shattered loudly, and bits of Jell-O flew in all directions,
splattering several bystanders. A security guard appeared at the doorway to
the cafeteria and Melanie ran over to where he stood and explained what had
happened and led him away. Justin followed her out of the room, and he could
see she was crying. Lance walked toward the wall on which JC was now
leaning and tried to pull him away from it so he'd stop hitting it with his
fists and kicking at it. He knew everyone was staring at them, but he
didn't care at all.
"Josh," Lance whispered, wrapping his arms tightly around JC's chest.
"Don't. Don't do this. Please."
"I'm not weak," JC said, spinning around and facing him. "I'm not."
"I know you aren't," Lance said. "You've been as strong as anyone
I've ever seen. And you've been fighting hard all along, right by my side
Josh. And I love you for it - more than I can even say."
"I'm just so fucking angry," JC said, looking into Lance's eyes,
pleading.
"So am I," Lance said. "And I'm tired and I'm scared. But this isn't
going to help. It really won't."
"I know," JC said, pulling Lance into his arms, and holding him.
"It's just that I don't know what else to do."
AUGUST 7, 2007
JC's Journal: Aaron is having trouble breathing. The fluids he's not
getting rid of by peeing are putting pressure on his lungs. His fever is
higher now too because - they say - he has an infection. The dialysis is
easier now because, at least, Aaron just lays there. To be honest, though,
I'd rather have him screaming because at least then he seemed like he was
fighting it. I hope to God he hasn't given up.
Nursing Notes: White blood cells elevated. Abdomen distended, discolored,
and tender. Femoral catheter showing traces of blood; removed and replaced
with subclavian line. Significant for pulmonary edema. Started on 60%
oxygen per order of Dr. Suchida. Lasix also administered, per same. Signed
and authenticated, DS.
* * * * *
Lance and JC had spent the last two hours with relatives: Joey's parents,
Lance's parents, JC's dad and brother, and Joey's brother, Steve. Chris had
flown into town too and was now at the house with Justin. Lance and JC
hadn't eaten in more than a day, despite being reminded to constantly by
everyone. It was just past four in the afternoon, and they were sitting
together on one of the reclining chairs next to Aaron's bed, JC on Lance's
lap, his arms around him, and his head resting on his shoulder. JC was
nearly asleep when Dr. Roberts and Dr. Suchida walked into the room.
"Gentlemen," Dr. Roberts said.
"Oh, hi" Lance said, poking JC in the side to wake him.
"What?" JC said, standing up and looking around, the disorientation plain
on his face. "What's going on? Where's Aaron?"
"He's right there," Dr. Roberts said, pointing to where he lay asleep in
his bed.
"Oh, okay," JC said, rubbing his eyes. "Sorry."
"No, it's fine," Dr. Suchida said. "But we need to consult with you both
for a moment about Aaron's most recent blood tests."
"What about then?" JC asked, the panic plain in his voice.
"Aaron has an infection," Dr. Suchida said. "We suspect it's peritonitis,
which is a potentially serious complication. And it leaves us with two
options. We can suspend the dialysis and remove the catheter line that we
suspect is the source of the infection, or we can continue antibiotic
therapy and hope that it eventually takes hold."
"But how can we stop the dialysis," Lance said. "His kidneys still aren't
working, are they?"
"No," Dr. Roberts said. "There's been no return of kidney function.
However, if the infection manages to enter the bloodstream, Aaron could go
into septic shock and he could die quite suddenly, before we had a chance to
do anything about it."
"Oh my god," JC said, swiftly exiting the room and walking into the
hallway.
"Perhaps you too should discuss this," Dr. Suchida said to Lance. "We can
wait in here while you decide what you want to do."
"This just isn't fair," JC said, feeling a hand on his shoulder and turning
around.
"No, it's not," Lance said, barely able to speak. "But none of it has
been."
"What should we do then?" JC said. "Should we call Melanie? And ask her?"
"No," Lance said. "This is on us, Josh. We need to decide ourselves."
"Then I say we keep him on dialysis," JC said. "He's only been on the
antibiotics for three days. Maybe it hasn't had time to work yet."
"Is that what you'd want me to do if it was you in there," Lance said,
taking JC's hand and holding it to his chest.
JC closed his eyes and his shoulders slumped. He had repeatedly wished it
was him in that bed, and not Aaron, but he'd never thought about it in the
way that Lance had just posed. What would he want Lance to do, if he
couldn't decide for himself?
"I'd want you to keep me on dialysis," JC said, opening his eyes and
looking at Lance.
"That's what I say too," Lance said. "I'll go tell them."
August 8, 2007
JC's Journal: The days all run together now, and I hardly know what
day of the week it is anymore. I never look at my watch anymore, because it
doesn't matter what time it is. I have no appointments to keep, or places
to be, except here, by Aaron's bed.
The nurses have been nice enough to teach me how to do certain things, like
how to change the sheets on his bed without disturbing him. And I wash him
now, every day, and rub lotion on his skin. The lotion smells bad, but it
keeps his skin from cracking. I can change the bag on his privates too,
which is there to collect urine. I do it every day, morning and at night,
hoping that there will be something in it, but there never is.
It's about 7:30 and Lance went down to the cafeteria to get something to
eat. He's lost like 10 pounds, and I've been bugging him to eat more. Of
course, then he calls me a hypocrite, because I've not been eating much
either. Everyone brings us food from home. Like yesterday his Mom brought
fried chicken she'd made. Lance had one piece, and I had a bite, but then
we gave the rest to the nurses - who loved it.
Lance should be back soon, so I guess this will do for tonight.
Nursing Notes: White blood cell count finally falling. Patient irritable,
restless, and easily agitated. Neurological consult ordered for diagnosis
of possible diffuse neuropathy secondary to hemolytic uremic syndrome.
Subclavian line is clear and no infection noted at site. Patient continues
on 100% oxygen. Peritoneal dialysis completed without complication. Signed
and authenticated, DS.
* * * * *
The click-hiss click-hiss of the ventilator filled the room with noise both
soothing and reassuring. JC hardly noticed it anymore; but he knew he'd
immediately notice it not being there. For him it meant that Aaron was
breathing and alive and still there. He had put his journal away and was
now standing beside Aaron's bed, facing away from the door, looking out the
window. The sky was black and the window was a mirror in which he could see
the door to the hallway behind him. He closed his eyes for a moment. When
he opened them, Lance was standing there, holding a cupcake with a candle
stuck in it.
"They wouldn't let me light the candle," Lance said.
"What?" JC said, turning around. "I don't understand."
"About the candle?" Lance asked.
"No. I mean yes."
"The oxygen," Lance said, smiling at JC. "We'd blow up."
"No," JC said, still puzzled. "I know that, but why's there a candle - at
all?"
"Happy Birthday," Lance said, handing JC the cupcake.
"What?" JC said. "You mean it's ...already?"
"Yeah, I know," Lance said, laying his hands on JC's hips and pulling him
closer. "We've been here eleven days. But I wanted to do something for
you, even if it was only a stupid cafeteria cupcake."
"Thank you."
"You're welcome."
"You know," JC said. "Lately, I haven't felt like a very lucky guy. I
mean, with everything that's happened and all. But, I want to tell you
something Lance. Standing here, right now, I feel like the luckiest guy in
the world. I do."
"I guess I'm glad they wouldn't give me a match then," Lance said, smiling.
And at that moment, if someone had been standing out in the hallway,
listening to the sounds within this hospital room, they would have heard the
soft click-hiss click-hiss of the ventilator; but they would have heard
another sound too, a sound that had not been heard in this room before:
laughter.
August 12, 2007
JC's Journal: We've been here fifteen days and it seems like fifteen
years. All I think about now is losing Aaron. Last night I went into the
chapel, not so much to pray, although I wanted to do that too, but just to
be someplace quiet and alone. Lance and his Mom were sitting with Aaron,
and told them I was going to go for a walk. I went to the chapel instead
because I thought it would make me feel better. It made me feel worse. If
there's really a God in this world, how could something as horrible as this
be happening to Aaron? Wasn't it enough that he lost his parents? It makes
no sense to me. None at all. And so now I wonder if I can ever believe in
God or miracles again.
Nursing Notes: White blood cell count is high normal now. Abdomen is still
distended, discolored, and tender. Subclavian line is free of blood and not
infection noted at insertion site. Patient drank small amounts of fluid,
but is still producing no urine. No other signs of improvement. Dialysis
continues. Signed and authenticated, DS.
* * * * *
It was late afternoon, nearly four o'clock, and the sun shining through the
trellis overhead made a lattice-work of shadows on the table. Justin and
Melanie watched as the waiter removed their half-eaten salads and refilled
their water glasses. The waiter moved silently, and with the brisk
efficiency of someone who knew he was intruding.
"Will there be anything else?" the waiter asked.
"No, just the check," Justin said, placing a credit card on the table.
The waiter picked up the credit card, acknowledging it with a small nod of
his head, and then he walked back into the restaurant. They were at
Montana's American Grille, a small restaurant on University Avenue in the
Hillcrest section of San Diego. Justin had picked Melanie up at her office
an hour ago and they had stopped here before heading to the hospital.
Justin could see the dark circles under Melanie's eyes, dark circles she had
not tried to hide with make-up. It seemed beautiful to him, if only in its
honesty.
"Have you been there yet today?" Melanie asked, staring at condensation on
the side of her water glass and then drawing a line in it with her
forefinger. "At the hospital."
"No," Justin said. "I was at the house - their house. I mowed the lawn,
and tried to straighten things up a little for them."
"That was nice of you."
"I didn't know what else to do," Justin said, crossing his arms across his
chest and then uncrossing them again. "I wanted to do something."
"I know. It's frustrating."
"So how's he doing," Justin asked. "Did you talk to Aaron's doctors yet
today?"
"Yes. I spoke with Lane Roberts, the attending nephrologist. Aaron was
dialyzed again today, and there's no sign of his kidney function returning.
None as of yet."
"That doesn't sound good."
"Well, it's not encouraging."
"Mel?" Justin said, leaning forward in his chair and clasping his hands
together. "Is he..."
The words trailed off. Tears appeared in Melanie's eyes as she turned to
watch the waiter walk toward their table.
"I don't know," she said, and then stood up and quickly walked away.
August 18, 2007
JC's Journal: Three weeks in hell and no end in sight. Aaron is barely
conscious, barely there. He doesn't say anything. His eyes hardly follow
me anymore. I read to him and it's like he can't hear me. But I keep
reading, his old favorites, and some new ones I bought for him. And we play
music for him too. Chris bought him a little CD player with speakers that we
can clip to the side of Aaron's bed. He bought him like 50 CD's too. It
was really nice of him. He said he didn't know what else to do. No one
knows what else to do anymore, including me. So I keep reading to him, and
washing him, and rubbing lotion on him, and combing his hair, and dressing
him in something different every day. Just like before.
Nursing Notes: Patient is afebrile and white blood cell count is within the
normal range. Platelet counts also dramatically improved. Fluid intake
increased moderately for treatment of dehydration. Serum creatinine and BUN
still elevated, but less than before. Patient remains listless and largely
unresponsive to all but the most forceful commands. Neurological consult is
normal, but continuing to monitor for possible CNS involvement. Subclavian
catheter removed over concerns about possible infection. Replacement lines
inserted into left subclavian and right femoral areas. Signed and
authenticated, DS.
* * * * *
Lance stepped off the elevator and headed once more to Aaron's room. He
had made this walk a hundred times already; but each time he made it, he
felt like he was entering alien territory, a place he'd never been to
before, a place whose language and manners he would never learn, nor fully
comprehend, no matter how long he stayed, a place that puzzled and
frightened him in equal measures, a place to which he hoped to never return.
He was carrying a brown paper bag that contained the dinner he had hardly
touched, despite his Mom's non-stop protest that he needed to eat to keep us
his strength. He knew that; but everything he ate anymore - or tried to eat
- tasted like dirt, or tasted like nothing at all. It was as if his senses
were abandoning him, his ability to taste, to see, to feel, to hear - all
that connected him with the world external to his own lived-in one.
As Lance approached to the door to Aaron's room, JC burst out of it and ran
into him at full force, knocking him down. He expected to see JC
hysterical, and he steeled himself to hear more horrifying news, although he
couldn't imagine what more was left except maybe to find out that Aaron was
dead.
"Lance!" JC screamed, pulling him up off the floor. "He peed! Aaron peed!"
He didn't hear these words at first. But then he did, heard them and
understood them. And when he did, he picked JC up and spun him around, like
he would have done to a child he was trying to make laugh and squeal with
joy, which was exactly what the both of them did: laugh and squeal with joy.
August 23, 2007
JC's Journal: They removed Aaron's dialysis catheter today and moved us out
of the PICU. Holding his hand as they pushed his bed down the hall, I could
hardly walk my legs were shaking so much. Not because I was afraid, or
nervous, but because I was just so overcome by it all. It was almost as if
I was afraid it wasn't happening, and that it was really just a dream. But
it wasn't a dream. And now we're in a regular room, and Aaron is sitting up
in bed, and he's drawing a picture for me. The picture has a big yellow sun
in it. And a house. He told me it was our house. It's beautiful.
Nursing Notes: Patient aware, alert, smiling this morning. He is
producing near normal amounts of urine. Pallor and swelling is mostly gone.
Left subclavian and right femoral lines removed. Temperature 98.6F and
breathing normal. Blood pressure elevated but near normal. Awaiting
results of blood tests. Signed and authenticated, DS.
* * * * *
There was a small park near the hospital, and Lance had often gone there to
walk around when the pressure and pain of Aaron's illness threatened to
overwhelm him. This time he had brought JC with him, and they were sitting
side-by-side on a bench, quietly holding hands, and watching the full moon
climb into the sky. They could hear the sound of traffic on the nearby
highway. It sounded like the ocean, or the rushing roar of a river. JC had
kicked off his sandals and sunk his toes in the long grass growing there,
enjoying its cool slightly damp feel. Neither one said anything. They just
sat there staring straight ahead, their chests not so tight anymore, and
their anguish receding like a wave pulling slowly back into the sea.
August 26, 2007
It was three o'clock in the afternoon, on Sunday. Lance was sitting in the
driver's seat of JC's Volvo, waiting for him to finish securing Aaron in the
car safety-seat. When JC was done, he climbed in next to Aaron, pulled the
door closed, and locked it. Aaron was sucking on a grape Jolly-Rancher
stick and his lips were purple from it. He hummed as he sucked on it and
bounced in his seat.
"All set," JC said, buckling his seatbelt.
"Okay," Lance said. "Let's go."
"Wave to Melanie," JC said, pointing to her through the window.
Aaron took one hand off his candy and waved at Melanie and then watched as
she waved back. Looking back toward the front of the car, at Lance, Aaron
pulled the candy from his mouth and said, "Where we going Daddy?"
"We're going home A," Lance said, his voice catching in his throat. "You
and me and Josh are going home."