I decided I'd post this now because I'm not sure I'll have time tomorrow and I promised both parts consecutively. Enjoy!
Love Sticks Part II
While Sarah wished she'd been there for Joseph, at the same time she was glad she didn't have to experience firsthand the horrors he described. She used to think that having baby Steve ripped away from her before she got a chance to hold him would be the most awful part of life as a CF parent, but in the past three years she'd grown to learn that CF played with many different kinds of awful, and they all hurt her equally.
This was the sickest she'd ever seen him, and it terrified her. Steve had barely spoken ten words since she got there yesterday afternoon, and most of those had been some version of "Ow!" "Go home," or "No more." The day before, he'd been his usual, spunky self, so busy playing that she'd practically had to beg him for a hug goodbye before she left for work. Now, he cried if Joseph let go of him. For the past two hours, Steve had been curled up tightly on his right side, the only position that didn't leave him constantly whimpering in pain. Joseph stayed behind him with a soothing hand in his hair, Steve's small frame tucked into the space between his knees and his chin.
Sarah fretted aimlessly around the bed. Occasionally she'd ask Steve if he wanted anything, but the answer was always silence or a whiny, "Uh-uh." She'd never felt like more of an incompetent mother—and an incompetent nurse—in her entire life.
"Sarah, I really have to pee," Joseph muttered quietly. If Steve heard him, he didn't react. His eyes were closed, which hopefully meant he'd managed to fall asleep.
She knew nothing good would come of Joseph leaving, even for such a short time. "Can you hold it?"
"I've been holding it for over an hour now. I think he's asleep. Now's as good a time to try as any."
"Okay."
Slowly and carefully, he inched his way backwards, leaving Steve alone on the bed. For all of five seconds, Sarah dared hope that their son didn't notice. But as soon as Joseph got to his feet, Steve's eyes snapped open in a panic and he started screaming. "Daddy, no!" He rolled over and reached for Joseph, but all he managed to accomplish was jostling his sore abdomen. His sobs grew louder. Sarah hurried to comfort him, ushering Joseph out the door so they could get this over with.
"Shh, it's alright," she said. She pulled the toddler into her lap and attempted to copy the way Joseph ran his hands through his hair. "He'll be right back."
Steve refused to be consoled so easily. "No! No more! Go home!"
"I'm sorry baby, not yet."
Joseph returned from the bathroom in record time, but not soon enough to save Sarah's heart from the assault of listening to her child sob and plead for something she couldn't give him. His cries increased in volume when Sarah let go, but began to quiet when Joseph returned to his post. Sarah bit her lip to keep herself from crying. Steve's entire face was red from screaming, and a patch on his left cheek looked even angrier than the rest from the adhesive that kept the first NG-tube in place. He had one hand curled into Joseph's shirt, and the other wrapped around his visibly distended abdomen.
Sarah demanded to speak to the doctor in charge of his case, because this clearly wasn't working. She knew how much laxative they'd pumped into him, and none of it had yet made a reappearance the way it was supposed to. He ordered repeat x-rays and promised to reevaluate from there. It sounded so simple. But one, Steve refused to be separated from Joseph, and two, Steve refused to uncurl from the fetal position. There was no way they could get a good look at his intestines unless he lay flat. The solution presented to solve both of these problems? Put Joseph in some lead protective gear and have him hold Steve down.
"Sarah, I can't do this," he said with fear in his eyes. "I've already hurt him so many times, I can't do it again."
"Joseph, he needs you."
"I can't."
"Yes you can. If it's not you, it's gonna be two strangers, and he's gonna feel betrayed because you left him."
That was enough to convince him. He squared his shoulders in what Sarah recognized as his "soldiering on" posture and agreed to the doctor's suggestion. They returned to the room to prepare to move Steve to x-ray. She was torn between being there for her son and knowing that watching would be equivalent to torture. In the end, she decided to follow to be there both for Steve and for Joseph. In all honesty, they probably both needed her in equal measures right about now.
Steve started crying as soon as they moved him, his face buried in Joseph's chest. Once they placed his tiny body on the table, a technician helped Joseph lay him out flat, Steve fighting and shrieking every step of the way. Sarah could see his every muscle quivering against the stronger hands holding him down. A second x-ray tech draped his bottom half in lead to protect him from the radiation, and the films were taken. Almost as soon as it began, it was over, and Steve snapped back into a tightly-curled ball, whimpering like an abused puppy. Sarah glanced at Joseph and saw that he was crying too, but silently. God, she wanted this nightmare to be over.
The blockage hadn't budged. When compared to the images taken when Steve was first admitted, the only thing that changed was that some smaller plugs of mucus and fecal matter further down the intestine had been washed out, probably from the enema, but the biggest plug remained stuck. The doctor explained that it was located right where his intestines had been stitched back together after the meconium ileus surgery when he was born, and the scar tissue was probably what allowed a blockage to stick so firmly. Nothing, not even liquid, could get past it.
"So what do we do?" Sarah and Joseph asked. To Sarah's ears, it sounded like he was about to propose another surgery, and her own intestines churned with panic at the thought of watching Steve go through that after everything he'd already endured.
"I think we should try another enema and at least twelve more hours on the NG-tube before we consider surgery. Adding more scar tissue to the same area will only make it more likely he'll develop obstructions there, so that's an absolute last resort option."
"Okay."
Twelve hours had never felt longer. Joseph sent Sarah away during the procedure to get coffee for the two of them. She'd never been more grateful for him. While she didn't want to watch, she'd feel guilty sitting out just to protect her own sanity. By giving her a job, Joseph gave her the perfect excuse. Sarah left the hospital room while they prepared Steve for transport once again and headed downstairs to the café in the lobby. Having a task was somewhat of a distraction, but it couldn't completely stop her from thinking about her son.
He'd made it almost three years without a major illness like this one. Sure, he'd been sick a few times, but never enough to require hospitalization. A few weeks on sick plan and some oral antibiotics had always been plenty. This was a whole new level of stress for all three of them. Sarah couldn't wait for it to be over so they could go back to normal life. At the same time, she wondered if this was a new normal. The obstruction had come out of nowhere, and she worried that this was just the first of many that would plague Steve for his entire life.
As she neared the front of the line, Sarah shook her head to clear it of such thoughts. One thing she'd learned reading the stories of other CF parents was that you couldn't let yourself think too far into the future. Fight each battle as it comes, but don't focus on the horizon. She needed to focus on the now. Sarah ordered her and Joseph's usual and carried them back to Steve's room.
She found Steve curled up even tighter than when she left him, sniffling weakly as Joseph rubbed circles on his back. He looked up at her and she could see in his eyes that this had been even more harrowing than the first one. "Did it help?" she asked.
"They got some out," he said. "No way to know if it's enough without another x-ray."
At the phrase "another x-ray," Steve tensed up impossibly tighter and whimpered. Joseph shushed him and assured him they weren't going anywhere. He continued, "They gave him more pain meds and something to calm him down."
"Good." As bloated as Steve already was, she couldn't imagine how painful being filled with yet more fluid would be. Sarah sat down in the chair closest to Steve and took Joseph's free hand in hers, careful not to get anyone's limbs tangled in the tubes in Steve's arms or nose. After half an hour or so, Joseph drifted off to sleep. The effects of the drug they'd given Steve started to wear off at the same time. His IV bags ran empty, and a nurse came in to switch them out for more fluids and laxatives. Steve watched her with blue eyes that had lost their distinct sparkle.
"No more," he begged, lip wobbling. "Too full." He curled up tighter and pressed himself against his father's body behind him.
"Just one more bag," the nurse promised. She turned to Sarah. "Try to get him up and about, or at least changing position every so often. Might help loosen things up."
Sarah nodded grimly. "Okay."
Not wanting to wake Joseph, she approached Steve and asked him quietly if he wanted to take a walk. He clenched his eyes shut and shook his head. "It might make you feel better," she encouraged. Steve didn't move. "Come on. I bet you can't make it all the way down the hall."
The challenge failed to pique his interest as she'd hoped. Sarah sighed despondently. This wasn't her son. The boy he usually was—who he was supposed to be—was gone, fled from his body in the face of all the suffering it had endured in the past two days. Sarah didn't throw around the word hate lightly, but today she hated CF for taking her son away from her.
~0~
Six hours after enema number two, it finally started to work. With Joseph's help, Steve had eventually taken a walk down the hall and back, and that combined with the continued laxatives finally did the trick. He was still miserable, but now for entirely different reasons. They'd been working on potty training for the past several months, and he'd very nearly mastered it, but he couldn't keep up with this, and that upset him just as much as the discomfort.
"I'm sorry," he cried for the fifth time in the past few hours. It broke Sarah's heart every single time.
"It's not your fault, buddy. Nobody's mad at you," she assured. He continued to sniffle anyway as she cleaned him up. As relieved as she was that the blockage was finally clearing, this process came with its own set of challenges, the least of which was hygiene. Steve's stomach still hurt fiercely. Though he couldn't articulate it, Sarah guessed that he'd gone from immense pressure caused by the buildup behind the blockage to intense cramps as everything worked its way out. That, and he was growing weak and shaky from dehydration. They upped the rate of fluids in both his IVs to try and combat the loss, but they could only do so much. Steve hadn't eaten in two days, and he probably wouldn't for at least another twenty-four hours.
Joseph wanted to go home and shower. He refrained from leaving until Steve fell asleep, but he still threw a tantrum when he woke up and Daddy wasn't there. Sarah did her best to console him, but she just couldn't compete with the connection he'd forged with Joseph on their first day here. Only Joseph's return fully calmed him down.
None of them got any sleep that night, between nurses coming in and out, Steve tossing and turning, and Joseph and Sarah switching off holding him. By morning, all of them were at the end of their respective tethers. Steve hadn't spent this much time in the hospital since he was an infant in the NICU, and Sarah surmised that his leech-like attachment to Joseph might be in part caused by the fact he was one of the only familiar things here.
That morning was also the first time he complained of hunger. He sounded surprised as he said it, so accustomed to a raging stomachache that this more natural feeling caught him off guard. "I'm sorry, but you have to wait a bit longer before you can eat," Sarah said gently. "We want to make sure your guts are working right before we put them to work, okay?"
"Okay," he said resignedly. If he was hungry, that meant he had to be feeling a bit better. Sarah offered to go find him some pencils and paper so he could draw.
"No thanks." He curled up into a ball again and let out a pitiful sigh.
Not quite that far on his way back to normal, then. Steve's next x-rays came back with beautiful results: no blockage. Taking the images had been far simpler than last time since Steve was much more willing to move now that he wasn't in such pain. Joseph still went with him, though.
His complaints of hunger grew more frequent as the day progressed, and the doctors finally gave him the go-ahead to eat after the last dregs of the last dose of laxatives were gone. Steve's eyes widened at the news. "Really?" he asked, as if he didn't believe he was no longer being denied such a basic human necessity.
"Yep. What do you want?" Joseph asked. The doctors warned against anything too fatty or difficult to digest, but Sarah knew that Steve wouldn't request anything like that anyway. Like most kids, he preferred the foods that he wasn't constantly encouraged to eat more of. It was the reason Sarah and Joseph struggled so much to get him eating enough to consistently gain weight even with his CF.
"B-ueberries." He still couldn't quite get the L sound in there, and part of Sarah hoped he never did, because it was fricking adorable.
Before they gave him food, they pulled the NG-tube. Joseph noticeably paled as soon as a nurse touched it, no doubt remembering the harrowing experience of getting it in. Steve remembered too, and he fought them off the best he could, weak from three days without food. They worked the tape off his face with adhesive remover while Joseph held him in his lap, pinning his arms down in a bear hug so he couldn't lash out. His cries continued through the removal process, and were joined by retching gags as the tube passed through his throat.
At last, the end came out and the nurse told him, "All done! You did so good."
Steve probably didn't even hear her over the sound of his crying. He twisted around and burrowed into Joseph's chest. Sarah fought not to cry herself. Less than ten minutes later, they brought him blueberries. Steve gazed at the fruit with trepidation. "Go ahead," Joseph encouraged him. He hesitantly brought one to his lips and chewed and swallowed it.
"Good?" Sarah asked.
He nodded. Over the next thirty minutes, he worked his way through the bowl. Everything stayed down, thankfully, and he didn't complain of any more stomach pain. Within two hours after eating, Steve was discharged. He was still exhausted, and the laxatives were still running their course, but Sarah saw the light immediately return to his eyes once he was returned to a familiar environment. The first thing he wanted to do, after a long, hearty nap, was draw. Her boy was back. Sarah hoped he'd stick around for a long time, but she knew CF had plenty of curveballs it could throw at any time. Until then, she soaked up every second.