When It All Falls Apart (Book One) (7 page)

“So, we aren’t going to try at all?”

“I don’t mean we won’t have sex. Of course we’ll have sex.” He grinned at me. “It’s not like I’ll start using protection or you’ll go on the pill or anything like that. We’ll just have sex like normal people. We’ll have it when we want to have it because we’re horny and not because we’re trying to make a baby. If we happen to make a baby, that’s great. If not, no worries.”

I’d agreed to the six month time off period. I still followed my cycle partly out of habit because I’d been doing it for so long, but also because I hadn’t given up on making it happen. I tried to have sex around the time I was ovulating, but it was tough because David’s sex drive took a nose dive. We had taken all of the fun and spontaneity out of sex when it became focused on getting pregnant. It was a common thing that happened with couples in our situation, but I never expected it to happen to us. Our sex life had been great even after having been together for over ten years. We still had sex multiple times a week and both enjoyed it. But during our pregnancy vacation, it was like David unconsciously took a sex vacation as well.

It was more than that, though. David was as familiar with my cycles as I was and it wasn’t lost on him that I suddenly wanted to have sex at the same time every month even though he never brought it up. He quit touching me or responding to any of my advances. I missed the way he touched me. The way he would make love to me slowly, savoring each part of my body as if it was the first time he’d experienced it. Much like everything else he did, he was a completely unselfish lover as well. He always took care of my own needs before taking care of his.

Our six month vacation kept extending and before long we were one of those couples who went months without having sex. It grew strange and awkward when we were close together and he even quit cuddling next to me while we slept. I craved his attention and his touch. It was why when Phil looked at me during the office party as our hands glazed each other at the refreshment table that rather than look away like I would’ve done in the past, I returned his stare. I never should have returned the stare. If I’d only looked away. Any other time I would have looked away but not That Night.

O
ur hospital room was small and the nurses needed easy access to Rori all night so only one cot was allowed in the room. David offered me the cot and he pulled the two chairs together so he could rest his head on one and his feet on the other. Rori wasn’t getting better despite all of the fluids they were pumping into her. She’d only woken up one other time and the nurses as well as the doctors were getting increasingly worried that she still hadn’t gone to the bathroom. Her stomach was beginning to distend. In addition, the last round of blood work showed that her electrolytes were back to normal but her bicarbonate level still hadn't moved. It seemed to be stuck at 7. In addition, the level of ketones in her blood was increasing rather than decreasing. They didn’t need to tell us that it wasn’t a good sign.

The good news was they were pretty sure they’d ruled out diabetes. Her blood and glucose levels were normal. The additional lab tests they’d run also didn’t point in the direction of diabetes. The last piece needed to officially rule out diabetes was the amount of sugar in her urine, but since she wasn’t going to the bathroom, we still couldn’t say with 100 percent certainty that she didn’t have it.

They’d taken another blood draw in the evening, but it had to be sent out to special labs outside the hospital so the results wouldn’t be read by the doctors until the morning. We were left with no choice except to try to get some sleep in our uncomfortable and cramped quarters, but it was impossible. Every few hours a nurse came into the room and checked on Rori and took her vital signs. Whenever I finally nodded off, the door opened and was quickly followed by beeping. David popped open his eyes even though I knew he wasn’t sleeping either.

“How’s she doing?”

“She’s hanging in there.”

The night was excruciating. The mattress on the cot was so thin I could feel the coils underneath me each time I moved. David’s chair screeched along the linoleum constantly because each time he feel asleep, his legs automatically fell off the chair pushing its legs across the floor. At six, I gave up on the idea of sleep all together.

“I’m going to the cafeteria to get coffee. Do you want any?” I whispered to David even though I didn’t need to because no amount of noise seemed to be able to wake Rori.

“Sure. Thanks.”

I wound my way through the maze of hallways until I found the cafeteria. To my disappointment, it didn’t open until 7. I couldn’t make it until then without a cup of coffee. I wasn’t going to give up and found a vending machine with coffee I knew would taste terrible, but it was better than none at all.

“Thanks,” David said as I handed him his cup with his two sugars and one creamer already stirred in. He slid the chair he’d been resting his legs on all night next to him and motioned for me to sit down. “Look, I’m sorry I was so pissed at you yesterday. I’m just scared. Really scared. And I feel so powerless to help her.” His big blue eyes filled with tears.

I took his hand. “It’s okay. I get it.” I rubbed my fingers back and forth across his and felt some of the tension in his body leaving. “We’re going to get through this. No matter what happens, we’ll make it through it.” We had to get through it. There wasn’t any other option.

David turned the TV on for the first time since we’d gotten into our room and we watched the early morning news beginning with the traffic reports. I couldn’t remember the last time we’d watched the news together. Neither of us spoke as we stared at the screen. Occasionally, one of us would turn to look at Rori whose color seemed to be getting more yellow with each passing hour. We’d gone through two series of morning shows before Dr. Koven walked into the door. Unlike us, she looked rested. Her face was flushed with the glow of pregnancy and her dark hair was pulled tightly back into a ponytail. She carried a cup of coffee from Starbucks and an IPad cradled in her arms. David rose from his spot to offer his seat.

She smiled wide exposing perfectly white teeth. “No, it’s okay. Really. I’ll stand. But thank you.”

Rather than sit back down, David continued to stand. As Dr. Koven read the nurses’ notes in Rori’s computer, he began to pace back and forth across the cramped room. “How are you guys holding up?” she asked.

“We’re doing alright.” I responded.

She looked down at Rori and concern passed across her face before quickly replacing it with ambivalence. “I’m afraid I have some bad news.”

The room rolled and then stilled itself. I held onto my chair with each hand. David looked as if he might throw up on the floor.

“Rori is very sick. We got the test results back from the lab and there are some serious abnormalities. I’ve called in a team of geneticists from UCLA and Children’s Hospital to consult on her case. They should be here within the hour.” She paused, giving her words a moment to sink in. “Unfortunately, Rori isn’t getting better. Her test results revealed that she’s experiencing acute kidney failure. It’s why she isn’t going to the bathroom and also why her ketones are so elevated. They’ve reached critical levels. Her entire body is completely acidotic. Our job is to figure out why.”

“What are we supposed to do? How do we treat it? What’s the next step? Is she going to be okay?” David asked.

“It’s important to remember that metabolic acidosis and kidney failure are not a diagnosis. They’re symptoms of an underlying disease. The only way to correct the acidosis and get the kidneys functioning again is to determine the underlying cause. Once we’ve done that, we can begin the appropriate treatment. It’s why we’ve called in a team of geneticists. We’ve ruled out all of the common causes and now we have to begin looking at rare and less common diseases. However, kidney failure is very serious and we have to begin treating it immediately even without knowing the cause of it.” Her face was emotionless. I wondered how she kept it that way.

“How do we treat it?” David’s voice was thick with emotion.

“We’re going to have to begin dialysis.”

“A four year old can get dialysis?” I’d never heard of such a thing. I thought dialysis was something reserved for the elderly.

Dr. Koven nodded. “It’s necessary when the kidneys are failing and unfortunately, Rori’s kidneys are failing. The job of the kidneys is to get rid of the waste products in the blood and when they stop working, the waste products begin to build up in the blood causing serious problems. This is what we’re seeing in Rori. Dialysis allows for a machine to artificially remove the waste in her blood and the excess fluid her body is retaining before putting her blood back into her body.”

“So, you take it out and then she gets better? How long does it take to get better?” David had managed to stop pacing and was leaning against the far wall, arms crossed, anxiously rubbing his hands up and down his arms.

“I wish it were that simple. Until we find out the root cause, she’ll have to continue to be on dialysis and I have to tell you that there are instances in which dialysis doesn’t work.”

“What happens then? What’s the next step?” I asked.

This time Dr. Koven couldn’t hide her emotions. I saw the lump of them rise in her throat and watched as she swallowed them back down. How many times a day did she have to go through this with parents?

“If dialysis doesn’t work, we’ll begin looking at a kidney transplant. In some cases–”

“A kidney transplant? Are you serious? How is this even possible? Three days ago she was perfectly healthy. She was totally fine. It doesn’t make any sense...” David was rubbing his arms hard enough to rub them raw. He looked like he might crumple on the floor at any minute. I wanted to reach out and take him into my arms, but I couldn’t. I was frozen to my spot. My brain heard the words she was saying, but they didn’t register.

“We don’t know, but I can assure you that she’s going to be in the best hands possible. The genetics team works with all types of rare disorders and I’m certain we’re going to find an answer. I understand how hard this must be for you to hear.”

“But she’s going to make it, right? Right?” I asked. My voice sounded hollow like it wasn’t my own.

“We can’t say. Your daughter is very sick. I have to be honest with you. There’s a chance she might not make it through this. Kidney failure can be fatal.”

David looked as if someone had punched him in the stomach. I grabbed a chair and pulled it over to him. “Sit down,” I said. I was afraid he might fall over if he didn’t. I stood behind him and placed my hands on his shoulders to steady him as he hunched over putting his head in his hands.

Now was the time for me to freak out, but I still felt nothing. Dr. Koven had just told me my daughter was suffering from a medical problem that had the potential to kill her and I was completely numb. Maybe I was in shock. People responded to bad news differently all the time. I was sure any minute the emotional impact of the news would hit me. It had to. Until then, my job was to be there for David and Rori.

“What’s the plan?” I asked. My brain automatically shifted into project management mode from all of my years in operations.

“This morning we’re going to begin getting her ready for dialysis. The first step is a very minor surgery where we open her veins up so we’re able to insert the dialysis needle. Like I said, it’s very minor so she won’t go under or anything. We’ll sedate her heavily and numb the area so she doesn’t feel it. The procedure only takes a few minutes. Then, once the opening is in place, we’ll begin dialysis. I want to begin it as soon as possible. Hopefully, by this afternoon she’ll be going through her first round.” Dr. Koven explained.

“And the geneticists will be here shortly?” I asked.

“I’ll bring them in once they’re all here. They’ll extensively review all of her charts and the blood work she’s had done. They’ll want to examine her as well. They’ll take a detailed family history from the two of you. It’s important that the two of you try to think of any family members both within your immediate and extended family who may have gotten sick, especially anyone you know who may have died in early childhood.”

I felt David’s quick intake of breath when she said the word “died.” He’d been right all along. This was serious.

R
ori woke up as they were wheeling her down the hallway for the surgery to prep her for dialysis. “Mommy, I want Puppy,” she cried. “Where’s Puppy?”

I wanted to kick myself. How did I forget to grab Puppy? Puppy was the pink stuffed animal she’d slept with since she was a baby. I’d forgotten the most important thing when I’d gone home to get our stuff last night. David never would’ve forgotten it.

“Oh honey, mommy’s so sorry. I forgot to get her last night. I’ll get her today for you, okay? I promise.”

She started to cry, but without any tears. Her face crinkled up as it always did and her mouth turned down, but the tears that would normally wet her face were absent.

“I want Puppy,” she sobbed. “I want Puppy!”

“Celeste, why don’t you go get it for her?” David asked.

“But what about her surgery?”

“You heard Dr. Koven, it’s only going to be minor. I think it’s important to get her. It’ll make her feel so much better if Puppy is here when she wakes up.”

Rori looked up at me expectantly. Her eyes matched her yellow skin.

Sure, I guess I could. But I wanted to be here for her surgery.” I said, turning to look at David. “Why don’t you go? It might do you good to get some fresh air.”

“I suppose I could go if you wanted me to.” He reached down to brush Rori’s hair out of her face. “Rori, honey, daddy is going to go home and get Puppy. Mommy’s going to stay with you while the doctors get you ready for your medicine. By the time you’re done with the doctors, Daddy will be back and he’ll have Puppy. How does that sound?”

“No! I want Daddy! I want Daddy!” Her voice echoed throughout the hallway reverberating off the walls. I wanted to cover my ears.