This one is not as long, but it sets the stage for everything else.
“Coffee?” Dr. Richardson asked as he poured himself a cup.
“Please. Black.” Rick answered. “Sharon too, with two sugars.” he added.
Sharon gave him a thankful smile.
They were seated in yet another small conference room. This one had a coffee maker though. “Thank God.” Sharon thought as she calculated the amount of sleep she’d had in the last twenty four hours.
Dr. Richardson placed a full cup in front of each of them just as April entered the room, held the door for what looked like another doctor and closed the door, taking a seat at the table.
“This is Dr. Engalls, he’s a Pediatric Psychiatrist.” he told them.
“Psychiatrist?” Sharon stated with fear.
“Mrs. Avery, I’ve been monitoring Billy’s behavior over the last day or so through both recordings, and live video. You know as well as I do that his behavior indicates that there is a physiological problem in Billy’s brain. It’s not unusual to see when a patient has had a procedure like he has, but what alarms me, is the pace at which he’s regressing.” Dr. Engalls explained.
“I noticed that myself.” She admitted.
Rick looked at Sharon with a quizzical expression and asked “What’s happened?”.
“Do you remember yesterday when I held him in the living room, how he cried when I made him stay there and he had to mess his diaper?” she asked.
“Yeah, he hated it, couldn’t wait to get out of it.” Rick answered.
“Well at about five am this morning I was woken up by Terry because I was having a nightmare. After I picked Billy up, calmed him down and calmed down myself, I asked him if he was a stinker butt because I could smell he had gone in his diaper. He looked up at me with a smile and said “Poopy” as if he was proud of what he’d done. Not only that, he went to sleep about three minutes later oblivious to his messy bottom.” Sharon informed him.
“Whoa.” Rick said, wanting to put the brakes on. “He actually went to sleep?”.
“Yes, he wouldn’t have done that at two.” she replied.
“Precisely my point.” Dr. Engalls told them both. “The problem is, he may, and probably will in my opinion, continue to regress, at least throughout the day and maybe tomorrow. In my opinion, he’s at no more than an eighteen month to two year old level now. By tomorrow, he may be functionally an infant.”
The expression on both Sharon’s and Rick’s face turned from puzzled to fearful with that piece of information. “Is there any way to prevent this?” Rick asked.
Dr. Richardson stepped in with “We’ll get to that. I don’t know if you’ve noticed, but Billy’s coordination is regressing as well.”. Turning to April, “When you were talking about the wagon ride, he attempted to clap his hands but his hands came together off center from each other.” he said.
“I noticed that” She said. “I also agree that Emotionally, he’s definitely below the two year old level. The amount of intervention it took in the MRI was more like what I’d see from an eighteen month old. His degree of attachment to his mommy is greater now than when he came in from what I’ve read.”
“So what now?” Rick asked.
Dr. Engalls took a deep breath and let it out slowly. “This is where it gets difficult. For all we know, this is a result of the brain adjusting to the change of not having the cyst in place. It may be temporary, it may not. There is no way to tell you at this point, based on the films they took a little while ago.” he explained. “There are medications we could give him to try to accelerate the healing process, but unfortunately, your son is taking HGH, the hormone that regulates his growth. There are some serious problems that can come from combining some of the meds I’m referring to with the HGH.” he told them.
“So what this boils down to,” Dr. Richardson added “is that if we attempt to treat the immediate issue with medication, then his hormone treatments will need to be stopped temporarily. So, the choice is, do we further stunt his physical growth, or do we take a chance on stunting his developmental growth.” he finished.
“How long would he need the meds you’re talking about now?” Sharon asked.
“A minimum of ninety days, in my opinion.” Dr. Engalls stated.
“That could have a definite effect on his physical growth if we stopped the HGH.” Dr. Richardson explained. “In looking at his records, I saw that it took some time for the HGH to yield ANY results when it was started. Taking him off the HGH now would have a profound impact on his ultimate stature, according to Dr. Chase, our Endocrinologist. So the choices are, do we leave him on the HGH and play the wait and see game with his regression? Or do we stunt his growth, potentially in a drastic way, and give him medications that may, or may not counteract some of what’s going on here.”
The instant Dr. Richardson uttered “wait and see”, Sharon’s stomach clenched. They’d played that game before, and it had cost Billy a great deal. So much so that she spoke up. “The last time we played a wait and see game with Billy, he lost.” she told them, tears in her eyes. She didn’t know if she could make another decision that would have that profound effect on her son.
“I’ve looked at his records, Sharon, and there was no way to know that what you did would have that outcome. It could have gone either way. This choice is different. The outcomes either way have a possibility of helping him a great deal or causing him a good deal of harm. I would much rather keep him on the HGH and watch just how far the regression goes, taking a chance he may not recover to his full status for a long time. The other choice will DEFINITELY affect his over all growth. As it is, he will be lucky to ever see five feet. If we stop his HGH, He may not grow any more at all.” He told her heatedly. Taking a deep breath, he continued. “Sharon, I know why you feel the way you do. I don’t blame you. But I really need you to see that this is different.”.
Rick asserted “Either way we take a risk. No matter which choice we make, it could cost him. What is the choice with the least risk?” he asked.
Dr. Richardson looked at Dr. Engalls. “That’s where we disagree, Rick. I think we’d be better waiting and keeping him on the HGH. Dr. Engalls believes it would be better to treat the issue with the pathological regression.” he explained.
“What does Dr. Chase think?” Rick asked.
“He thinks the HGH is the more important treatment in the long run.” Dr. Richardson told him.
“But that’s only because he’s an endocrinologist.” Dr. Engalls retorted. “It stands to reason that he would want to stick with treatment that he knows.”
Sharon held her hands up. “I’ve heard enough.” She said wiping her eyes. “Dr. Engalls, I’m sure you are very good at what you do, as is Dr. Chase, I’m sure.”. Turning to Rick she said “Honey, let’s wait. Leave it as it is for now and see how things go.” she told him.
Rick was shocked and couldn’t keep it from showing. “What made you come to that decision?” he asked.
Looking at Dr. Richardson, her voice breaking, she told him “Look, when we sat down to discuss options before the surgery, with Dr. Jennings, I’d never felt so helpless in my life. He didn’t offer anything but stark realities. No hope, No care. When we sat down with you…” her voice broke as the tears made their way down. Clearing her throat, she continued. “You wanted to know not just what the clinical stuff was, you wanted to make it better for Billy. You cared. Not about protocols or treatments so much as about Billy.”. She took a moment to wipe her eyes again. “Everything you did yesterday showed your first concern was my son. Because of that, I will trust you in what you tell me today.”
Rick couldn’t help it when tears broke the plane and hit his cheeks. He silently thanked God for this woman, and then he felt ashamed. He had gotten caught up in the treatments and the details of them, and hadn’t looked at what his wife pointed out. Dr. Richardson had been there with Billy’s interest at heart from the moment he came out of surgery. He had gone way beyond what was required of him, all in Billy’s interest. When he considered the thought that this physician could ever put anything above Billy’s needs, it seemed totally preposterous.
Rick ended this discussion with three words, “Wait and see.” then stood up and leaned toward his wife and wrapped her in his arms saying “I love you and thank you, you showed me what I forgot to look for.” with a thick voice.
“He cares, it’s what matters most to that little boy.” she answered through her tears.