When the Fireworks Begin (Chapter XXIV)

July 2012...

The continuous buzzing, interrupted by a gradual beep woke Devon up.  She looked around the room, a little bit disoriented, trying to remember where she was.  Then that was when she recalled that she was rushed at the hospital last night.  She saw Dianne and Danica, sleeping on the couch, with textbooks lying open on their laps.

She looked at her sisters, they are probably exhausted.  It has been a  tiring month.  This confinement has been her second, during this month alone.  The first one lasted for a week.  She has no idea, how long this second one will be.

There was a bunch of flowers and balloons on a table at a far-end of the room.  It looks like somebody has already visited her while she was asleep.

Her BiPap machine was sitting beside her bed.  The BiPap machine, a ventilation equipment, was something that they were able to purchase because of the fun run.   However, not all of the money raised through the event went to her medical needs. On Devon’s insistence, part of the money raised was donated to an ALS support group.  

Much has changed over the course of short month.  It seems like the day she gave the speech in the fun run was the last intelligible conversation she was able to make.  Just a week after that, James noticed that the way she was speaking was already starting to waver. 

Devon was always nearly out of breath after just a few words.  She feels that her tongue is starting to be stiff.  There were times when her jaw refuses to move.  She now fears that her speech clock is starting to wind down.  In a few months, she now realized she would not be able to speak again. 

The funds raised through the fun run also helped them purchase a communicator machine.  This was actually a face of the reality that everybody was hesitant to acknowledge.  The loss of ability to move can be accepted and they can work around with it.  But the loss of her voice, her inability to communicate with friends and family is like losing her, altogether.

Her speech therapist has guided and helped her understand the need of pre-recording messages when the day it was impossible for her to speak comes. To exercise her reflexes, she would record messages on the speech device, things which will help all of them in the future. By using her right thumb, the only finger she could move, she was able to choose letters and navigate through her communicator.

She closed her eyes and tried to will herself to go back to sleep.  She heard the door opening, and her sisters stirring on the coach. Devon slowly opened her eyes and saw James approaching her bead with a bag of food, followed by Dr. Alvarez.

“Hello sunshine,” James greeted, approaching her and planting a kiss on her forehead.  Devon gave him a small smile.   “Just woke up?”

Devon nodded.  And looked at Dr. Alvarez, raising her eyebrows.

“How is my favourite patient doing,” asked Dr. Alvarez.  A nurse followed him, giving him Devon’s records. He looked at it before taking a closer look at Devon.

“Still breathing, but with severe bad breath,” Devon croaked.   “Don’t get too close, I haven’t brushed my teeth yet.”

Dr. Alvarez cracked a smile. “Still breathing and funny,” Dr. Alvarez remarked.

James smiled at his wife.  There was a point in their lives when Devon was very depressed about the disease.  But now, as her condition worsens and during the direst situations, it seems that her positive outlook and humour is returning.

“How are you feeling,” Dr. Alvarez asked.  “Are you feeling any kind of pain?”

Devon gave a little shake of her head.  Dr. Alvarez nodded. 

While being wheeled to the emergency room, Devon passed out from intense pain.  She can’t understand where the pain was coming from.  It feels like every inch of her body was burning with it.

“Technically, it’s the same infection,” Dr. Alvarez reported.  “The same thing that has infected you two weeks ago, came back. But we’re already giving you antibiotics, and we would like you to stay for a few more days for observation. Okay?” Dr. Alvarez asked both Devon and James.

Devon nodded.  She wants to go home and rest on her bed instead, but she does not want to go against Dr. Alvarez’ orders. 

Devon’s breathing grew a little heavier.  She felt her head spinning a little bit.  She looked at her BiPap machine. James noticed it.  He immediately stood up, the nurse realizing what James intend to do, assisted in hooking Devon with the machine.  She settled down on her pillows and wiggled her eyebrows to show that she’s already alright.

The BiPap covers most of her face, making her unable to talk.  The past few days would often require her to have the mask most of the day, making her unable to talk.  Dr. Alvarez has already noted how often Devon has been hooked-up at the machine and realized that it could also be one of the reasons why she was battling the same chronic sinus infection.  Her frequent use of the BiPap is already affecting her eating. 

Dr. Alvarez approached James.

“I’ll just finish my rounds, then I’ll be back,” Dr. Alvarez said. “We need to talk about something.”

Dr. Alvarez patted James’ shoulder before leaving the room.  There was a soft knock on the door.  It opened and Shey’s head popped.

“Hi,” Shey quietly greeted, putting on a huge smile on her ways.  But her eyes showed, otherwise.  They were puffed and red, probably because of crying. 

James noticed this and looked at Ivan.  Ivan made a brief nod, acknowledging what James has noticed.

“How are you,”  Shey asked, approaching Devon. 

Devon looked at Shey and wiggled her eyebrows.  Her thumb made an almost unnoticeable movement.

“I am okay,” Devon’s pre-recorded voice from her speech device answered. 

“That’s good to hear,”  Shey soothed.  “You scared the wits out of me last night.”  Shey’s voice trailed, quivering a little bit.  She bit her lower lip. “Don’t do that again, okay?”

“Sure, bebe,” Devon’s digital voice answered again.

“Your recordings are the worst,” Shey managed a shaky laugh. 

Last night was scary. It was the worst that they have seen.  Devon has been screaming, crying, gasping for air, and her eyes dilated before she closed them and lost consciousness while being taken to the emergency room. 

A few minutes later, Shey noticed a message typed on the computer screen.

“You wimp,” Shey read. “There’s more to come. Ha. Ha.”

It was not funny, Shey’s bottom lip quivered again.  If she opens her mouth, she’s sure going to cry. Ivan noticed this and jumped in the conversation.

“I agree with you. Shey’s a complete wimp. She almost fainted in the emergency room last night when a kid with a broken wrist came in,” Ivan shared. 

Shey hit Ivan on the stomach.  The story was not true, but Shey was grateful.  Ivan pretended to wince.

“We’ll come back later, a child with a scraped knee might come in and we have to take Shey to emergency,” Ivan joked, placing his hands on Shey’s shoulders guiding her out to the door.  “But before that happens, I need to eat.”

“We’ll be back later, we’ll just be in the canteen,”  Shey waved.  James thought she won’t be able to make it out the door.  But Ivan managed to take Shey out without a single tear. 

James thought he heard Shey’s faint sobs behind the closed door.  Everyone is trying to hold-up, trying to match Devon’s positivity.  Another soft knock on the door.

“You have a lot of visitors,” Diane greeted.

It opened and Mr. And Mrs. Rocafort came into view.  Mrs. Rocafort was holding a takeout bag from the Resort’s restaurant. 

“Hi,” Mrs. Rocafort greeted, approaching James and kissing him on the cheek.  “I called your nanay and heard that they went home for a while to change clothes.  I told them to rest a bit and we can stay here with you.”

“How are you sweetheart,” Mrs. Rocafort asked Devon, kissing her on the forehead.

Devon wiggled her eyebrows, still her BiPap making her unable to speak.  She pressed the same recording saying that she’s okay.

Mrs. Rocafort gave her a warm smile and started to talk to Devon’s sisters.

“Have you girls eaten,” Mrs. Rocafort asked. She motioned for the two to eat on the far-end dining table.  Mr. Rocafort meanwhile, walked besides James. 

“How is she,” Mr. Rocafort asked, his voice without the edge and iciness. Sometimes it surprised James that his father was able to direct questions and sentences towards her wife without any trace of contempt. 

“She’s a bit better but Ninong would like to keep her inside for a few more days,” James shared. 

Mr. Rocafort nodded. He leaned towards Devon and squeezed her hand. It was a simple gesture but it means a lot.  Another soft knock came to the door and Dr. Alvarez came in again.

“James, I just need to ask you to check some details on Devon’s medical history,” Dr. Alvarez stated, indicating James to go outside.

Mrs. Rocafort waved at James. “Go,” she said. “I’ll watch her.”

“I’ll come with you,” Mr. Rocafort volunteered. 

James gave Devon a kiss on the forehead.  “Will be back, baby,” he greeted.  “Why don’t you sleep and rest.”

Devon’s eyes smiled and her eyebrows shot up and down.

James and Mr. Rocafort followed Dr. Alvarez out of the room.  Once outside and the door firmly closed, James asked about the record.

“The record was just an excuse,” Dr. Alvarez reasoned out. “I just need to talk to you alone regarding Devon’s condition.”

James felt his heart started to pound. Whatever this conversation will be, he does not like the way his ninong is starting it.

“We know that Devon is struggling with her breathing. The BiPap is a great machine for her, but she can’t eat while she’s on it. And you have to admit, she’s been spending most of her time with it strapped on her face,” Dr. Alvarez started.  “She’s also been suffering from infections because of it.”

“So what are you saying,” Mr. Rocafort asked his friend.  

“Given that there’re a lot of things to consider in terms of her health, we should start thinking about other breathing options. There’s a procedure called tracheostomy,” Dr. Alvarez explained.  “It’s a surgical procedure where an opening is made through the neck into the windpipe to allow the use of a breathing tube and hooked up with a ventilator.  It will not only her breathing but also her swallowing will be easier...”

“We’re making a hole on her neck?!” James reacted loudly, when Dr. Alvarez’s words finally sunk in.  He looked appalled and angry at what Dr. Alvarez is suggesting them.

“It’s just a suggestion,” Dr. Alvarez said calmingly.  Most patients and families were taken aback when tracheostomy is suggested.  “The decision will still be yours.”

James looked completely overwhelmed with Dr. Alvarez’s suggestion.  Mr. Rocafort sensing his son’s discomfort and shock decided to take matters on his own hands.

“Pare,” Mr. Rocafort started. “We do understand that you have Devon’s best interest in mind, but this is shocking for us, give us time to think about it.”

Dr. Alvarez nodded. “I am not asking you to make a decision now, however, I feel that you need to know about other possible solutions. There are pros and cons that you should also know when deciding to make a tracheostomy.”

Mr. Rocafort nodded.

“And while we’re at it,” Mr. Rocafort continued.  “I heard that there’s a clinic in Singapore specializing in ALS that is conducting clinical trials.  Have you heard about this?”

“I did,” Dr. Alvarez eagerly answered.  “I was actually about to suggest that but that will still be James’ and Devon’s decision.”

“What is this about,” James asked.

“Well, I found out through several colleagues  that a prestigious clinic in Singapore are conducting clinical trials to slow down ALS  progression thru several therapies,”  Dr. Alvarez shared. “Now, these are trials.  There are no means to say if it will help in slowing down the disease’s progression.  If you want, we can ask them to include Devon as part of the study group.”

James digested the idea. 

“They’re testing for a cure?” James asked.

Dr. Alvarez shook his head.  “Not a cure, James.  Just therapies to slow down the disease.  If it will work on Devon’s case, then it’s like buying her more time. It’s free, since it is a clinical trial.”

“No worries about the air fare or any kind of additional expenses.  I’ll handle that,” Mr. Rocafort assured his son.

“But is she strong enough to fly that far,” James asked worriedly.

“Well, we have to wait for her condition to stabilize before she can fly,” Dr. Alvarez answered.

James looked at his father.

“It’s up to you and Devon,” Mr. Rocafort assured. 

James looked at Devon’s closed bedroom door.  Clinical trials. No assurance. No cure. More time. His thoughts were warring in his head.

“We’ll talk about it,” James answered. 

He would give all his money and possessions away just for Devon to have more time.  More time with him.