Chapter 14
Remus comes to slowly. It takes a bit for him to even realize that he is at all conscious or aware but, when he does, he wishes that he weren’t.
The pain is truly indescribable. Remus has never felt anything like it and he’s felt many types of pain. His brain tries to make sense of what is happening and what he is feeling but he can’t see anything and the sounds he can hear are indistinct and unclear.
He tries to open his eyes but they don’t obey. He strains to hear but the sounds and voices remain difficult to discern. He tries to open his mouth to speak, wanting to beg for relief, for his hearing aids, for an explanation but his body remains stubbornly still, not responding to him.
There is a gentle pressure on his aching shoulder and a comforting pressure in his hand but he still can’t think around the pain. The pain, the pain, the pain !
There is a jostling in his throat and he feels the brush of a hand on his chin. Suddenly, his breath is gone and he’s suffocating. He tries to move, to thrash against the lack of oxygen, he doesn’t know what’s happening. He can’t breathe, why can’t he breathe? And why can’t he cry out? He wants Sirius, he wants Sirius because he would never allow this pain to continue, never allow him to suffocate and suffer.
Something invades his airway painfully and despite his urge to gag and cough, he doesn’t. His body is unable to move or react. He doesn’t know how long he’s without air, doesn’t know how long he screams internally against the feeling of oxygen starvation but he wants to cry out again at the sensation he gets in his head when, suddenly, there is another jostle at his throat and he’s breathing again.
The dizzy relief of getting air back nearly, nearly , eclipses the feeling of the pain but it doesn’t last long. The pain is too extreme, too intense.
Remus floats like this for a while, feeling indescribable pain and trying to scream for relief only to find that he can’t move, can’t speak, can’t open his eyes. He tries to remember back to what he’d last been doing but his thoughts are fuzzy and slow and the pain is so excruciatingly present.
It feels like he’s being ripped apart at the chest and like the open cavity is being filled with boiling, burning water. There's something tugging at his skin and he wants it to stop, he tries to reach with a hand to make it stop but his limbs are like lead and, just like his eyelids, he can’t make them move.
Then finally, finally , he hears it.
Hears him.
It’s Sirius’ voice, he’s sure of that. He can’t understand his words without his hearing aids but he knows that he’s there and Remus calms slightly. He hears Sirius’ voice speaking to him, desperately wishing he could understand his words.
As if Sirius could read Remus’ mind, he finally feels the familiar press of cool, hard acrylic slipping into his ears, the wire wrapping around the top of his ear, and the behind the ear appliance resting gently onto the backs of his ears. He hears a quick ten beeps as the hearing aids power on and then suddenly the sounds around him begin to make more sense, coming to him more clearly.
“I’m going to bolus some extra pain meds now,” a familiar voice speaks but Remus can’t place it, can’t match it to a face or a name. “His heart rate is increasing a bit indicating he might be feeling some pain, so just keep talking to him, Sirius. He might be able to hear you.”
“Relax, love,” Sirius croons, his voice sweet and comforting. “They’re just changing your bandages. You’re doing so well, Remus.”
Remus still can’t manage to get his eyes to open, can’t manage to open his mouth to speak.
I’m here! I’m here! Oh, god, please make it stop Sirius! Remus shouts and shouts internally but he can’t make his awareness known, his body still unresponsive to his attempts to move.
There are gentle thumbs on Remus’ cheeks now and it's then that he realizes he’s crying and the gentle brushing thumbs, must be Sirius’, are wiping his tears away. He tries to open his eyes, turn his head, something, but his body doesn’t obey. He wants to see Sirius, to beg him to speak some more.
“Shhh, I’m here Rem,” Sirius croons again, one soft thumb continues to caress his cheek, the other begins drawing soothing circles on the back of Remus’ hand. “They’ve just got to change your bandages to keep the incision healthy. I know it hurts baby, they’re getting you some more pain medicine.”
There is a new, smaller pain, a brief sharpness like a bee sting. Then, gradually, a warmth spreads over his chest, down into his limbs and up into his head. The pain recedes and all he’s left with is the sound of Sirius’ voice next to his ear and the comforting pressure of Sirius’ hand in his.
Remus still can’t manage to get his eyes to open, can’t manage to open his mouth to speak. He tries with all of his might to will his body to obey his commands. He wants to see Sirius, to speak to him, to know that he’s really here and that this isn’t just a dream.
“Just relax, love,” Sirius croons again, his voice sweet and comforting. “Your new heart is doing so, so well baby. All I need you to do right now is rest and relax. Let your body heal.”
New heart?
Transplant?
Oh?
Oh.
Oh.
Now, Remus remembers vaguely. He’d last been awake getting ready for his heart transplant surgery and now, the surgery must be finished. The pieces are falling slowly into place in his brain.
He tries again to move, to speak, to let Sirius know he’s ready to wake up now but just then the other voice begins speaking again, letting Sirius know he’s going to bolus some more sedatives and, despite Remus’ internal protests against being sedated again he finds awareness slipping. Sirius’ voice fades and then he’s once again falling into oblivion.
The next time Remus is aware of what is happening around him, he isn’t sure how much time has passed or how long he’s been unconscious but this time, mercifully, he isn’t in pain.
He, again, tries to open his eyes but they continue to remain firmly closed to the outside world. He can tell he already has his hearing aids in because the noises around him are crisp and clear despite it being pretty quiet.
He can hear whispering coming from somewhere else in the room and though the voices are still too quiet for him to understand what is being said, he can tell that the voices are Lily and Marlene.
He tries to listen but his attention is pulled away and toward his own body again, where he can feel his legs and hands being manipulated and stretched, his sore, stiff muscles protesting the movement. He grimaces and is surprised to find that he feels his mouth and eyebrows pull in discomfort.
“Hey, Moony, you’re okay,” it's James’ voice on his right side. “I’m just stretching your hand, I’m sure it's pretty sore.”
Then there’s a hand on his face, attempting to smooth out the tension in his eyebrows.
“Sweetheart, are you hurting?” It's Sirius’ voice this time. “Can you open your eyes for me?”
Remus tries to open his eyes but still, they remain closed. The paralytics are still too strong for him to fight off, he tries again and again but he only manages to make his brow furrow with more tension and tears of frustration begin to fall from beneath his closed eyelids.
“That’s okay, baby. If you can’t open them, that’s okay,” Sirius hastens as he notices Remus’ tears, Remus’ hand is gripped tightly in Sirius’ now. “How about my hand, baby? Can you try and squeeze my hand?”
Remus, still crying in frustration, focuses on Sirius’ hand in his and the way he desperately wants to communicate with his husband. He puts all of his energy forward and manages to twitch his fingers just enough for Sirius to feel.
A gentle kiss is pressed to his temple in reward, “That’s it baby. Good job, Rem.”
Sirius and James continue to stretch Remus’ fingers and hands and arms and they speak to him while they work. James tells him all about how the team is doing and how close they are to clinching a spot in the playoffs.
Sirius explains that Harry and Emma were at the hospital earlier with Effie and Monty and that Emma has started making grabby hands for Remus when she sees him, wanting to be held by him. This breaks Remus’ heart, he wants to be a good godfather to the baby but how can he do that when he can’t even open his eyes?
“Dr. Dearborn says that they will begin weaning you from the sedatives in a couple days or so, they’ve wanted to give you enough time for your incisions to heal before we try and do your trach cares while you’re awake,” Sirius explains as he and James finally settle down into their chairs again, finished with stretching and repositioning Remus’ limbs. “I can’t wait to see your pretty eyes again. I’ve missed them so much... I miss you so much.”
Remus doesn’t miss the way that Sirius’ voice hitches as that last confession and he thinks Sirius might be crying. He twitches his fingers again, asking for Sirius’ hand and his husband obliges.
Remus squeezes Sirius’ hand as hard as he can, which really isn’t very hard at all, but it’s enough. He tries to pour all of the things he wants to say into that one gesture.
I love you.
I miss you, too.
I’m scared.
I’m in here.
I hear you.
I want to wake up now.
I want to go home.
When can I go home?
“I love you, Remus,” Sirius says, his hand gripping Remus’ and Remus feels Sirius’ head settle gently onto Remus’ shoulder. “I love you so much, I can’t even begin to explain it.”
Remus squeezes Sirius’ hand again.
I love you, too.
Everybody falls silent and eventually, Remus drifts back to sleep, content knowing that Sirius is there with him. Nothing bad can ever happen as long as Sirius is there.
Sirius has never really considered himself much of a caregiver at heart. Sure, growing up he’d cared for Regulus in much the same way a good parent would have even though he was just his older brother. But he’d always assumed that he’d naturally fallen into caring for Regulus in such a way because he loves his brother and he’s not a complete monster.
Who could look at a neglected, physically abused child and ignore him when he’s crying?
For much of his life, he’d cared only for Regulus and, while he’d loved James, he’d never needed Sirius in such a way. In fact, it was often James who was caring for Sirius when he was still mentally unwell and undiagnosed.
That all changed the day he moved into his dorm room in college and met Remus.
Sirius had never known somebody who was sick before, so when this strange boy began setting up all of his pill bottles and medical equipment, Sirius didn’t know how to react. Honestly, he’d kind of wanted to ignore Remus because all of the equipment and medications, the wheelchair and the strange way this giant man walked with a stiff leg and arm kind of freaked Sirius out.
Soon enough, though, Remus had enmeshed himself into their little group of friends and Sirius had grown attached to him and, before he knew it, he found himself worrying over and caring for Remus.
Somehow that led Sirius to this moment, sitting here at Remus’ bedside, ten years later.
Being Remus’ caregiver had come to Sirius naturally, just as naturally as it had come to him for Regulus. The first time he saw Remus have a seizure Sirius felt that same feeling of protectiveness he feels for Regulus rise in his chest and it’s never gone away.
He still feels it right now, all these years later.
A week on from Remus’ heart transplant and Sirius still feels like his own heart hasn’t quite settled in his chest.
He isn’t sleeping, he’s barely eating, and he only takes his meds because James or Lily or Reg force them down his throat. He can’t make himself take his eyes off of Remus, his already debilitated body further ravaged by his heart failure and the trials of the past few months.
How many times over the past ten years has Remus been literally at death’s doorstep? Far too many for Sirius to count. He actively tries not to keep track, knowing that his fragile state of mind can’t handle that kind of information.
It’s late at night now and he’s all alone with Remus. He hasn’t had much alone time with Remus these past few months and he revels in the ability to just be in solitude with his husband.
He surveys Remus’ body, crumbling and decrepit from the stress of illness. Sometimes it’s hard for Sirius to even set eyes on his husband’s body because all he can see are the changes. The diapers, the PEG tube jutting from a distended belly, the tracheostomy that Sirius just knows Remus regrets agreeing to. His already damaged right leg and arm have begun to develop contractures, the result of lack of use and increased spasticity from the stress of his illness.
The physical therapy team tells Sirius that there are things they can do to help alleviate the contractures but it still makes Sirius feel guilty. He can’t begin to imagine how painful those contractures will be for Remus when he wakes up.
He tries to remind him that all of the new pieces of medical equipment are temporary but he can’t help but hear that little voice in the back of his head that reminds him that some of it may not be. He might live with severe, long-term disability from this most recent ordeal.
And, while Sirius would happily care for Remus in his current state for the rest of their lives, he knows that Remus is suffering greatly. He’s in pain. He sees the pain when Remus, despite still being under the influence of sedatives and paralytics, cries as they do his physical therapy, or suction his trach, or change his bandages.
The average heart transplant patient survives only about nine and a half years after transplant. That’s the average patient and Sirius knows that Remus is sicker than 99% of other heart transplant patients.
Sirius knows that if Remus had been under the care of somebody other than Dr. Dearborn, he may not have even been approved for the transplant list because of his brain injury and his weak lungs. Dr. Dearborn knows Remus though, and knows that if any “tough case” deserves a chance, it’s Remus.
But Sirius is keenly, heartbreakingly aware that they’ll be lucky to have Remus for an extra year post-transplant, if he ever even wakes up from the current coma.
Eyes trained on his and Remus’ entwined hands, as Sirius massages Remus’ contracted, stiff fingers, he wonders if he’s somehow made the wrong choice. If, maybe, he should have allowed Remus to die relatively peacefully all the way back last summer when he coded for the second time during that stormy, summer night.
Was all of this pain Sirius’ fault? Did he encourage Remus to keep fighting just so that he could have extra time with him? He honestly doesn’t know if he’s ever truly considered what Remus really wanted in all of this.
Sirius feels his eyes heat with burning tears and he buries his face into Remus’ shoulder, letting the tears fall silently.
He feels selfish and scared and so damn sad.
Sad that this is where their first year of marriage ended up.
Sad that this is just one battle in the war that is Remus’ poor health, more challenges are definitely going to arise in their future even if Remus lives for several more years.
Sad that he can’t just magically switch places with Remus and take all of his pain away.
There’s not much Sirius wouldn’t do to take Remus’ pain away and that’s the worst part isn’t it? Sirius is there and willing to take Remus’ pain onto himself so that Remus can have some reprieve from the suffering and it’s just not possible.
Sirius can’t take his pain because it’s not possible.
It’s.
Not.
Possible.
And that just kills Sirius a little bit, that knowledge.
If only he were a wizard or a god, he’d make sure his sweet, perfect husband never felt pain or suffering another single moment in his life. But he’s not any of those things because those things don’t exist. So he can’t make miracles come true and that just makes Sirius’ bitter tears come faster, burning his eyes and his crushing soul as they trail their way down his face.
The next time Remus becomes aware of his surroundings, it's to a flurry of activity in the room around him. The room is full of people, some he knows and some he doesn’t. He knows this because he can finally, finally, open his eyes.
He blinks tiredly against the fatigue and dryness of his eyes and he surveys his surroundings, looking immediately for Sirius. It doesn’t take him long to find him among the faces, always there right by his side.
There is a slight burn in his airway and he can hear the distinctive sound of a nebulizer machine. He sits calmly through the neb treatment, Sirius holding his hand comfortingly.
After several minutes, the nebulizer machine cuts off and then the respiratory therapist is jostling with his ventilator tubing.
A nurse hands Sirius a large, folded up towel which he places over Remus’ chest.
“Okay Remus,” the respiratory therapist speaks clearly and slowly, enunciating her words in a way that kind of makes him bristle with irritation. He’s not a child, he’s not stupid. “We’re going to do cough assist now. Sirius is going to help out by holding this towel firmly over your incision, it’ll help with some of the pain okay?”
Pain? He looks over to Sirius, his eyes wide and frightened, questioning.
“It’s okay, Rem,” Sirius assures him, holding the towel onto Remus’ chest. “Coughing is a lot of pressure on your incision so I’m going to hold the towel to help protect your incision from the pressure of the coughs, okay?”
Remus’ eyes begin to well up with tears and then James is there and Lily, too. James is carding a hand gently through Remus’ hair and Lily is rubbing his foot soothingly.
The respiratory therapist hooks him up to the cough assist and it's excruciating right from the start. Sirius presses down with the towel firmly each time the machine forces an exhale, which helps mitigate some of the pain but the pressure of coughing on his still-healing wound and his still fractured sternum makes him feel like he’s being sliced open right here and now with no anesthesia.
Remus’ face contorts in agony, tears flowing freely down his cheeks and James’ voice is there and he’s doing his best to coach him through the painful treatment.
“Almost done Moony,” James says, his voice low and soft. “Just need to suction you and do a few more rounds of coughs, then they’ll be done. You’re doing so well.”
When the suction catheter is threaded down into his airway, he gags and coughs painfully at the intrusion which just adds to the pressure in his chest. He thrashes and writhes against the pain, his arms pulling weakly at the restraints holding him back, his head moving futilely trying to avoid the next pass of the catheter into his trach.
“You need to stay still Moony,” it’s James’ voice again, and then his face above Remus’ blocking out the harsh fluorescent lighting so that James is all he sees. “I know it hurts but you need to stay still so they can suction you safely.”
James gently holds onto Remus’ head, a strong hand on either side of his face, holding him in place to keep him from avoiding the suction catheter or dislodging his trach. It’s not done harshly or meanly but it still makes Remus feel trapped, and he begs for James to let go. He doesn’t.
It goes on like this for all five rounds of his cough assist treatment and by the end, Remus is positively sobbing, begging and screaming for reprieve. His pleas and cries are silent, suppressed under the trach tube in his throat but his suffering isn’t lost on anybody present at his bedside.
“I’m sorry, I’m sorry, I’m sorry,” Sirius is chanting by the end, though he remains calm and steady, his hands firmly pressing the towel onto Remus’ incision and healing breastbone.
When the respiratory team finishes his treatment and has finally hooked him back up to the ventilator, they too apologize for his pain and discomfort. Remus doesn’t hear them properly, his mind too clouded by the pain and the way his brain has gone fuzzy as his hunger for oxygen is finally satiated.
“Help me,” Remus begs, the murky haze of delirium is beginning to take hold and suddenly he is scared, terrified, and he feels too trapped.
“It hurts, it hurts!” Remus exclaims silently as Sirius does his best to comfort him, Remus’ hands strain weakly at the restraints, his legs move feebly as he attempts to move them in an effort to stand up and get away.
“I’m so sorry, baby,” Sirius says, his face buried in Remus’ curls. “I’m so sorry, I’m so sorry. You’re okay, nothing bad is going to happen love. I’m right here.”
Karl appears suddenly at his bedside and begins speaking but Remus isn’t hearing anything through the fog of fear and dread. He feels the sting of medication again and soon, he is feeling blissful again.
Remus becomes doe-eyed, his gaze becoming glazed and mellow as the medicine begins to circulate in his system. Sirius sits with him, his face drawn and taut with anxiety.
“Sing?” Remus mouths, his eyes wide and pleading.
And how could Sirius refuse? So, he sings. Voice clear and sweet, a knuckle rubbing gently on one of Remus’ flushed cheeks.
It takes several songs and some massaging of his sore legs and arms to get Remus comfortable but eventually he is finally comfortable enough to close his eyes and soon he is sleeping again.
The moment Remus is determined to be asleep, Sirius and Lily watch quietly as James excuses himself from the room, tears falling down his cheeks.
The two of them exchange a glance but neither gets up to follow him out into the hallway.
Finally awake, even if he’s often not totally coherent or too high on painkillers to even see straight, Remus has finally been allowed to begin with speech therapy. The speech therapy team temper his expectations by explaining to him that it will likely still be weeks or months before he’s able to vocalize again but they assure him that everything they do in therapy will get him closer to speaking and closer to weaning off of the vent.
They help him practice building up his oral muscles by having him spit after having his oral cares done instead of just relying on the suction catheters that usually dry his mouth for him. He cries the first time he tries this because he can’t coordinate the muscles well enough to actually spit into the basin and ends up needing to have it suctioned away.
It feels to Remus as if he will never regain these basic skills again. His whole life, he’s feared being seen as helpless and pitiful but that is just what he realizes he’s become. His arms and legs are atrophied beyond recognition, his limbs and extremities suffering painful contractures that have him unable to even use his right hand or move his right leg.
And now, he finds he’s unable to even do something as simple as spit after brushing his teeth.
It’s like he fell unconscious all the way back in July and just continuously wakes up in a new and creative hell every few months that are thought up by some vengeful being wishing to viciously punish him.
What he’s being punished for, he doesn’t know. But he does know he wishes it would stop. He wants to stop now. He’s just too damned tired for this anymore.
But he can’t stop now. He should have refused the transplant, should have refused the tracheostomy and all of the life saving measures he has had performed this past year. He wishes he’d had a DNR written up before last July so that he would have never been resuscitated in the first place.
He wishes but it’s pointless. He didn’t refuse the transplant and now he’s here, and he has to keep trying until his body decides to give up on his own. He’s trapped now, in a prison of his own making.
So, he doesn’t stop. And he has therapy every day. Physical therapy and respiratory therapy and occupational therapy and speech therapy. And in speech therapy, he practices the spitting skill everyday for a week before he’s able to successfully spit his saliva into the basin for the first time. He feels uncharacteristically proud of himself and the praise from Sirius, James, and Lily doesn’t even feel patronizing. He knows just how hard he worked to regain such a small skill.
Relearning how to swallow, if it’s possible, is even harder than re-learning how to spit. Not to mention, it’s more painful on his raw, unused throat. Luckily, his appetite has returned but his stomach is only able to tolerate certain foods and usually only liquids or foods that are near-liquid like pudding and yogurt.
So now, he sits here patiently as Sirius feeds him truly miniscule bites of strawberry yogurt which might just be the most flavorful thing he’s ever tasted considering he hasn’t had anything flavorful in his mouth for months. He wants to cry at how good it feels just to be able to taste anything, even if it is a bit muted with his sense of smell still mostly gone due to the tracheostomy.
Remus only gags occasionally and he manages to finish most of the portion. And when he’s done, Remus turns his head to the side to avoid the spoon coming at his mouth to indicate he doesn’t want any more.
Sirius helps him settle in for a nap, lowering his head only slightly and reattaching the restraints, at his wrists just in case Remus were to wake up and was alone for some reason. He’s still a bit out of it sometimes due to the pain meds and they’ve come way too far to allow him to accidentally pull out his trach or his PEG tube now.
“Okay, Remus,” the head respiratory therapist on his team speaks to him kindly and clearly. “We’re going to do a spontaneous breathing trial. What that means, is I’m going to take you off of the ventilator and I want you to breathe on your own, as long as you can. Okay?”
Remus nods in understanding, his anxiety ratcheting up just a tad as the RT moves to remove his vent tubing.
She counts down from three and then his breath is gone. For a few moments, he flounders, suffocating and starved of oxygen. Then her hand is on his abdomen, pushing lightly on his diaphragm and reminding him to try to breathe.
Remus focuses as hard as he can and he manages a breath in and then out. It’s a wheezing, inadequate breath and it does nothing to quell the air hunger that has begun to tighten his chest but he tries again. Another small breath, in and out. He manages five small breaths before his eyes are watering from lack of oxygen and he’s reattached to the ventilator.
“Good job, Remus,” the respiratory therapist praises, as she marks some boxes on her computer screen.
For the next hour, Sirius and Lily by his side coaching him through his tiny, difficult breaths, Remus continues to attempt spontaneous breathing. But by the end of the hour, Remus hasn’t managed any more than the tiny wheezing breaths he’d had at the start.
He’s exhausted by the end of it and when he’s finally reattached to the ventilator for good at the end of the session, Remus closes his eyes and revels in the free-flowing oxygen. His eyes feel heavy and sleep seems to be imminent but he does his best to remain conscious and present as the RT speaks to Sirius and Lily, explaining her findings.
“The scope visualized significant tracheal stenosis and my findings from his spontaneous breathing trial are that he has the classic signs of ventilator-induced diaphragm dysfunction,” she explains, a look of regret on her face.
Sirius’ expression becomes immediately strained, his face drawn with anxiety. The respiratory therapist hastens to allay his fears.
“I know this isn’t the news we’d hoped for, but it isn’t necessarily a hopeless diagnosis,” she says, laying a comforting hand on Sirius’ shoulder. “It just means we’ll need to be a little bit extra patient and be creative in our therapy efforts.”
Remus is nice and mellow despite the news being given by his RT, a sure sign that his pain pump is functioning effectively. He typically has severe anxiety anytime the topic of his trach or ventilator is discussed. Sirius knows that Remus wants it gone, wants to breathe on his own. He want to talk and laugh and never have to experience a painful trach change again.
But Sirius can read between the lines here and he knows that were Remus a bit more coherent, he would be able to, as well.
He knows that the respiratory therapist is really saying that there is a chance Remus’ diaphragm is paralyzed or damaged beyond saving. There’s a chance he’ll never breathe without ventilator support, that he’ll never be free of trach changes and cough assist treatments and hourly suctioning.
Suddenly, Sirius is very, very grateful that Remus is a bit too doped up to really understand what is going on right now.