This chapter is a difficult one. It originally was going to be part of the next one, but unfortunately, my hands aren’t cooperating tonight. With any luck, you’ll get that part tomorrow.
I hope you like it,
As Peter stood outside the room waiting for the blood to be drawn, he couldn’t help thinking about Billy’s behavior. None of it made sense. Why would he blush after having spent days as an infant or toddler? Even if he had seen himself as unable to do otherwise because of his physical situation, then why did he not have the same problem on Christmas morning once they had opened the presents? He just couldn’t make sense of this. The more he thought about it, the more he wanted someone more qualified to take a look at his behavior and see if they could make sense of it.
He walked back into the room and told Rick and Sharon “The more I look at his behavior, as well as his emotional responses, the more I want someone more qualified than I am to take a look at him. I can ask Gary if the hospital has someone on staff, or I can call Craig. Which would you rather I do?”
Sharon and Rick answered in unison “Call Craig.”
“Good enough.” he replied and left the room to make the call. As he talked with Craig about what happened, and what he thought was wrong, he made sure to give detailed accounts of Billy’s behavior. He was satisfied when Craig said he would be by the hospital in two and a half hours. That would give them time to get the tests done and have Billy awake when he got here.
It took an hour to get the MRI done, and they moved Billy back to his room. Peter sat down to talk with Rick and Sharon. “We need to do one more set of tests.” Peter told them, and then reluctantly added “And he’s not going to like them at all.”
“What tests?” Sharon asked with a frown.
“Nerve conduction studies and an EMG for all four of his limbs. It involves sticking needles into his muscles and reading the current generated by moving those muscles. The tests will help narrow the source of the tremors down. There is no other way to get this information.” he explained.
“Won’t he be asleep for this?” Rick asked.
“No, he can’t. We need to be able to get him to flex his muscles in order to read how they perform. It’s something he has to do, there’s no way to do it for him.” Peter elaborated.
“You’re right, he won’t like this at all.” Sharon said with a worried expression.
Considering the test for a moment, Peter thought of something. “I could insert the needles while he’s asleep. That way the painful parts will be done before he wakes up. It will be uncomfortable for the needles to be in place, but shouldn’t be like a needle stick.” he offered.
“Is there no other way?” Sharon asked, practically begging him with her eyes not to do these tests.
“I could forgo this, but then we wouldn’t know for sure what the source of the tremors are.” he told her.
Rick looked at Sharon and said “Honey, we need to know. They can’t treat what they don’t know.”
Sharon gazed at Billy as tears burned her eyes. Steeling herself, she said “Alright, let’s get this over with.”
Peter left the room and located Gary. He explained his idea of inserting the needles before waking Billy and Gary liked that idea. “He’s not going to like having the needles in place, but at least he doesn’t have to endure the sticking part.” Gary told him.
“Exactly.” Peter agreed.
A little while later, they had Billy restrained in a crib with both sides down. Peter was using a felt tipped marker to make small dots where Gary inserted needles. Once they had all of the needles in place, Peter explained “Sharon I need you to keep telling Billy that if he stays still, it won’t hurt. Don’t get me wrong, it’ll be uncomfortable, but it won’t hurt. I’ll be asking him to move each limb in turn as we go and Gary will record the readings.”
Sharon took a deep breath and placed both palms on Billy’s face, one on each cheek. When she was ready, she nodded her head.
Peter injected the medicine to wake him up and they waited.
Billy slowly became aware that something was irritating his arm. Then his thigh felt the same way. It wasn’t long before there were a bunch of places that felt like someone was poking him with a finger. He opened his eyes and Mommy told him to stay very still. He didn’t understand until he tried to move his arm and it felt like something stung him in his upper and lower arm at the same time. He immediately started crying his eyes out and the tremors started.
Sharon watched as he flinched and then he started shaking all over. He cried loudly then and she didn’t know how to get it across to him if he just stayed really still, it wouldn’t hurt. Not knowing how else to get his attention, she pinched his cheeks hard for a second and said “Stay Still!” loudly.
Mommy scared Billy and he quit trying to move. He continued to cry, but didn’t want Mommy to be mad at him.
“That’s it Billy, stay very still and it won’t hurt, do you understand?” Sharon said as she caressed his cheeks gently. She hated that she had to yell at him, but he wasn’t listening at all and she couldn’t stand to see him hurting like that.
Billy tentatively whimpered “Yeth.”
“I’m not mad at you Baby, but you weren’t listening to me, and I had to get your attention. I didn’t mean to scare you, but you need to stay still.” Sharon explained.
Peter moved up where Billy could see him and said “Alright Billy, I’m going to ask you to move your muscles one at a time. When I do I need you to ONLY move the muscles that I tell you to, understand?”
“Mmmm Hmmm” Billy said through his tears.
“Now when you move, it’s going to sting just a bit, but it will stop just as soon as you relax your muscle, I promise.” Peter told him.
The test took an hour and Sharon decided right then that she would never subject her child to that ever again. With the tremors, it was almost impossible for Billy to only move one part of a limb, so he would get poked in several places at once. This frightened him and of course the tremors would get worse. By the time they were finished, he was scared to death to move at all.
Peter watched this poor child go through this process and about fifty percent of the way through, he told Gary “I can’t do this to him anymore, we’ll do the legs here and here. Forget the rest.”
“Thank you.” Sharon said with tears in her eyes.
Five minutes later, Peter turned to Billy and said “That’s all of it Baby. Just lay still and we’re going to put you to sleep and take all of this off of you.” as he moved up to the head of the crib. Leaning down, he said “I’m really sorry we had to do this Little Boy, but it had to be done to help you get better.” as he kissed Billy’s forehead. Less than a minute later, Billy was asleep again.
As he took the needles out he said “I’m really sorry Sharon, there was no other way to know.” as tears stung his eyes.
“I know.” she told him. “But I will tell you, he won’t ever have this done again. I can’t watch that again.” she added firmly.
“I won’t ever do it again, I can promise you that.” Peter assured her.
“Nobody will.” Sharon said with out a doubt.
Once they had everything off of him, they removed the restraints and Peter gave him a Tylenol suppository to aid with the soreness that he would feel in his muscles. “He’s going to be tender where the needles were for the next day or so. We’ll give him Tylenol every four hours to ease the pain.”
“Thank you.” she said.
Peter picked Billy up and gestured for Sharon to lay down on the bed. When she was comfortable, he laid Billy in her arms. “We need to go look at all of the test results. I’ll be back to talk with you and Rick in a little while.”
Just before Peter left, he put his hand on Sharon’s shoulder and said “I’m sorry Sharon, I really didn’t want to hurt him.” with a pained expression on his face.
“I know Peter.” she said softly. “I don’t blame you, I just won’t ever allow that to be done to him again.”
“Alright, I’ll be back.” he said and they left the room, leaving Sharon holding Billy close.
Rick came in the room a moment later and sat down next to his wife, hugging her with one arm as she continued to cry. “No one will ever do anything like that to him again.” she said with a haunted expression.
“Alright.” he told her and kissed her wet cheek as he held her.
It took Sharon a while, but she settled down and was able to look at her baby boy without feeling huge guilt at allowing them to hurt him. She knew they needed the results of those tests, and she knew Peter wouldn’t have put him through that if it wasn’t absolutely necessary. The look in his eyes when he left told her that clearly. When she saw him coming toward the room, she told Rick, “Hold Billy for a moment.” and handed the boy to him. Getting up, she waited until Peter came into the room and immediately went to him and embraced him in a tight hug. “I’m sorry I made you feel worse than you already did Peter. I know you wouldn’t have done that unless it was absolutely necessary.”
Peter kissed her cheek and with a thick voice said “Thank you.”
As Sharon was taking Billy back into her arms, Craig walked in carrying a bag, and placed it on the window sill before saying “Good afternoon.”
“How are you Craig?” Rick said as he shook his hand.
“I can’t complain.” he replied.
They both turned to watch Peter slide what looked like several x-ray films into a lighted box. He turned to them and said “Have a seat, this will take a bit.”
When everyone was seated, Peter looked at Sharon and said “What I suspected was right. There was some damage to the brain tissue from the pressure of the swelling.” Getting up he move to one of the films and pointed to an area and said “This very white area is one of the damaged regions. This one is what’s responsible for the tremors.” as he turned to look at Sharon.
“Billy had a cyst that was compressing the hypothalamus. When the cyst was removed, the area had swelling.” he told her as he picked up a model of the brain and approached them. "Here is where the hypothalamus is, like you’ve been told, it’s a vital part of the brain that regulates a lot of different functions, including urination, hormones, emotion and body temperature. Right above that is the thalamus. It’s responsible for sensory perceptions, in other words feeling cold or hot, and motor functions, like lifting your foot. The same swelling that caused Billy’s change in personality, responding like a baby, also affected his motor function as we saw when he slowly lost physical function and reverted to infantile physical behavior.
As he started to heal, we saw things start to improve. Little by little, things got better physically. First he was able to hold his head up, then he could say a few words. Eventually, he was able to roll a ball.
When Elena terrified him and the first incident happened, we saw a change in his perception, as well as some small changes in his physical function. He no longer was able to look at the world as a nine year old, but more like a toddler of three. His ability to speak followed suit.
When he came here, things started getting better still. He began crawling, and we heard a larger vocabulary. Then the incident at the restaurant took place, and that’s, I believe, when the inflammation got intense. It wasn’t so much that it was worse than the second time he was hospitalized, but it looks to have been a lot more localized.
It was right around the area of the thalamus and the hypothalamus. This is why it wasn’t easy to see the damaged areas on the first MRI’s we did. Inflammation tends to cover things up and muddy the area you’re trying to look at. That’s why we didn’t see it. When we gave him the Toradol, it became clear as a bell." Peter explained.
“So how is this going to affect him?” Sharon asked with a frightened expression.
“Right now, he’s responding like a toddler emotionally, but intellectually, he’s still a very intelligent nine year old. That actually puts his intellectual age at closer to twelve.” He said. Peter thought for a second on how to put this so he didn’t scare the hell out of them. “Sharon, there’s a lot we don’t know about that particular area of the brain. For all we know his emotional age may improve in weeks, or it may stay just as it is.” he told her.
Tears spilled over onto Sharon’s cheeks as she asked “For how long?”
“It’s possible it may be permanent, there’s no way to know.” he told her softly.
Rick hugged her close as she began to cry. “What else?” he asked past the lump forming in his throat.
“It’s possible that the tremors will improve, it’s happened before, but it’s also possible he’ll have them for the rest of his life.” Peter said, hating himself for the anguish he was causing Billy’s parents. “There may be other physical issues that we haven’t seen yet. When Billy told me he’d messed his diaper, I assumed that it was because his muscle tone wasn’t what it should be because he hadn’t had control of his bowels or bladder for a while now. The body doesn’t keep what we don’t use. Seventy two hours after not using a muscle, the body begins allowing it to atrophy, to waste away. It only keeps what it needs. Seeing the films now, it’s possible he will have trouble staying clean and dry due to the scarring. He may also have trouble walking.” he said, glad to be finished with this ominous news.
Sharon pulled Billy closer to her and began sobbing. She had wanted him to need her, but not like this. She didn’t want her little boy to have to fight to do what everyone else takes for granted. She began rocking him gently as she cried. Occasionally kissing his soft cheek.
Craig stood up and motioned for Peter and Gary to leave the room. Turning, he put his hand on Rick’s back, allowing him to stay turned away from him and said “We’ll be right outside if you need us.” and left with the other two.
Peter stood outside the door crying. He couldn’t help it. He’d had to give terrible news with a horrendous prognosis many times in his life, but only once to someone he really cared about, and the memories of telling his wife that their child was going to pass away came crashing down on him then. He saw Craig leave the PICU, and wondered how he could walk away from them like that. It made him angry that a person that should be available when they were ready to talk could just leave.
Peter’s tears became much heavier when April came walking through the door and dashed into his arms. He understood now. Craig had gone to sit with Becky. He felt terrible that he had automatically assumed the worst of this caring man.
As a thought occurred to him, he turned to Gary and asked tearfully “Can you give him another dose of Thiamylal? Sharon’s going to need some time before he wakes up I’m sure.”
“Of course.” Gary answered as he placed a hand on Peter’s shoulder. “I’m sorry my friend.” he said.
Peter released April for a second and hugged his longtime friend as he said “Thank you.”