This one clarifies a few things, and puts others in perspective.
Peter stood by silently, as they dealt with the relief of finding out that Billy was still in fact Billy, just with some difficulties. He had been overjoyed at Billy’s ability to do the simple math in his head. That told him that he was in fact talking to a nine year old instead of someone younger.
After several minutes, Sharon settled down, happy to be able to hold the little boy she knew. Rick had figured out what was going on before Sharon, and had silently thanked God that his son was still there.
Sharon was about to ask Rick to hand her a can of formula, but it occurred to her that Billy may want his ba-ba instead. Pulling him back from her, she looked in his eyes and asked “Billy, do you want your ba-ba?”
Billy, scared for a moment that he wouldn’t be allowed to nurse at her breast, lost his grip on his emotions as he moved his arms, indicating his answer was no.
Seeing Billy’s fresh tears, Sharon told him “It’s OK, Baby, you can nurse, hold on a sec.” as she laid him on his back in her lap and readjusted her gown so she wasn’t exposing her entire chest, after moving the tube to her left nipple. She didn’t even have to ask as Peter handed a can of the Pediasure to her. Pulling the tab, she emptied the contents into the bag, she repositioned Billy on his right side. No sooner did she move toward him, he was latched on to her and nursing.
As soon as he felt Mommy’s boobie in his mouth, Billy let his concentration lapse. It was too hard to hold onto anyway, with the sensations he was feeling as he nursed. Soon, he was lost in the feel of nursing and being so close to Mommy.
Peter chuckled at that moment.
Looking up at him, Sharon asked “What?” not understanding what he was laughing at.
“Oh. No, it’s nothing any one did or said, trust me.” he explained. Then lowering his voice, he told her “If you talk quietly, he cannot hear you, just FYI. This is good actually, it means you don’t have to separate from him in order for us to talk.” he finished.
“How do you know that?” Rick asked softly.
“He didn’t hear me the first time I asked him if he was able to.” Peter clarified.
Looking foolish, Rick said “Oh, I missed that part.”.
“I was just thinking and it struck me as funny. I want you to consider everything that’s happened over Billy’s life from a medical and emotional point of view. When you consider that his hormone deficiency, and the choice you folks made to wait and see, made Billy much smaller than he would have been otherwise.” he started and raised his hand to stop Sharon from interrupting.
“Next we add Billy’s desire to be treated like a baby. So now not only does he want to, but he’s small enough to make it practical and it’s easy to see him as a baby. Then we add his parents willingness to provide the treatment he feels he needs, and enjoying that, whether they want to admit it or not.” he said.
Rick’s face colored at this, but he didn’t want to incriminate himself further, so he said nothing. Wondering for a moment how Peter would know that, it dawned on him and he glanced up at the camera and then to Peter.
With a wink to Rick, Peter continued. “Last we add the seizure and the cyst into the mix. Suddenly, Billy really has no choice but to accept being cared for as a baby, his physical situation warrants it. Can you imagine how difficult his situation would be if he didn’t want it?” he asked.
“When you add all of this up, Billy’s been preparing for this moment all of his life.”
Rick laughed, he couldn’t help it. “You know, when you put it all together, you’re right. We made our choices about each and every part of this, and it appears it was necessary.”.
Sharon offered “Rachael always says ‘there’s a reason for everything, we may not know what it is, but it’s there’ and if ever there was a good example of it, this is it.”.
“Sound philosophy.” Peter said.
After a moment of thought, “I want to talk about what you can expect at this point.” he told them. “If you really watch Billy’s eyes, you will notice there are times when he’ll seem unfocused. The thing that made me understand that his faculties were still intact is, I was watching his eyes to see if the pupils were the same size and such when all of a sudden I could see him focus his attention.” he explained. “So you really need to look before you ask him a question. It will save you from worrying and prevent you from assuming a wrong answer.”.
Looking down at Billy, Sharon saw his eyes were closed. Looking at Peter again she asked “What if I don’t read it right?”.
“I imagine you’ll have a crying little boy to comfort. What parent gets it right every time?” he asked with a smile.
“You’ve got that right.” Rick said with a depreciating chuckle.
“Trust me, it won’t take long to get the hang of it. The only reason I saw it was, I look for these kinds of things every day. Soon you will too. Besides, ninety percent of all of what you will do for Billy for a while, won’t require an answer from him. You don’t ask an infant if they want to take a bath.” he explained, and then added “Well, you might ask them, but no matter how they respond, you still give them the bath.” with a smile.
That made Sharon think. She would have to do everything for this little boy, almost exactly as if he were an infant. Bathing, feeding, changing, dressing, all of it. Despite the gravity of the thought, she was happy to be able to care for him this way.
“We’re going to send him down for another MRI to see what changes have taken place, and to make sure everything is alright. I don’t want to frighten him under the circumstances, he has enough trouble controlling his emotions as it is. We’re going to sedate him for this one, so it should be a lot easier.” Peter explained.
“I don’t think I have to point this out, but functionally, all the time physically, and probably half the time emotionally, he’s an infant. You need to respond to him that way, or he will get confused and anxious. I know you two understand this, but you will want to make sure anyone he comes in contact with understands. It will save him some stress. Right now, he doesn’t need it.”
“And another thing, this is what I was actually laughing about before, his body will be trying to rebuild and replace damaged brain cells. If you hadn’t made the decision you did with waiting on the hormone treatment, his body would no longer be able to produce brain cells. That ability stops after age eight. Because his body doesn’t realize it’s made it to eight yet, he can still grow new ones.” Peter explained with a smile.
Sharon was once again thankful this man was Billy’s doctor. With that statement, he justified the decision so long ago that she was still beating herself up for.
“Because of this, I want to switch him to a special formula that is high in protein and amino acids. You’ll need to go to a pharmacy to get this when you take him home as a dietitian will see that it contains everything his body needs. I want you to give him the formula at least every four of hours or so. Infants have baby fat for a reason. It provides a reserve should something go wrong. Are you planning on nursing him for a while?” he asked Sharon.
“I was yes. Is there any reason I shouldn’t?” She asked.
“No, no reason at all. It will help him come to terms with what’s happened. But I want you to still use the tube setup even when you start to produce milk. It will add stuff that your milk won’t have in it.” he answered.
“Speaking of going home, when can we expect him to leave?” Rick asked.
“If everything goes as I hope it does, billy will be discharged tomorrow. I will wait to pull the central line in his neck until the last minute so we won’t have to stick him with needles to draw blood.” Peter answered.
“Thank you very much for that.” Sharon said with relief. She would hate to have to hold him so they could poke him with needles every four hours. The one she used to give him the hormones was bad enough once a day. There was no way to avoid it because it went just under the skin or she would have insisted.
“I’m going to drop his steroid dose back to the norm this morning, and when he goes home, he’ll need to take an oral liquid. I’ll see that you get a med dispenser for infants. That reminds me, you need to be diligent with hygiene because the steroids dampen down the immune system. If he gets an infection, he’ll have a hard time fighting it. I suggest you, and everyone that has physical contact with him use a waterless hand cleaner.” Peter finished.
“I know I’ve given you folks a lot of information, but trust me, you’ll be fine. We won’t send you home without knowing what you need to make that baby happy and healthy.” he said with a smile.
Sharon gave him an appreciative smile and said “Thank you, for everything you’ve done Peter. Your a godsend.”.
“It’s alright, I’m glad I was able to be here to help the little guy get through this.” Peter told her as he got up to leave. “April will let you know when it’s time for the MRI.” he added and left the room.
“Wow.” Rick said. “That’s one very smart man.” he added.
“Yes, and one that cares a lot about his patient.” she replied.
Both were lost in thought for a moment, digesting all of the information that Peter had given them.
“Hon, we’re gonna need a crib.” Rick said with surpirse.
“Hmmm…I forgot about that. Not just a crib, but a stroller, a bath seat, and probably thirty other things I can’t think of right now. Oh, and don’t let me forget a wipe warmer. The poor baby hates it when I use cold wipes on him.” She said. Two seconds later she chuckled.
“What’s so funny?” Rick asked.
“It just surprises me how easily I forget that he’s nine.” she answered.
“Right now, I don’t think that’s a bad thing. If you think about it, he’s gonna be spending about half the time with the awareness of an infant in terms of danger. It’s better to mistake him as an infant when he’s not then the other way around.” he told her.
“Oh God, I didn’t think about that. We’ll need to baby proof the house.” She said.
“I believe we just did that for Bobby didn’t we?”.
“Yeah, your right. At least that’s one less thing on the list.” she told him.
Rick looked at her and smiled. “Honey, we’ll get through this, I promise.” he told her.
The fact that he said we reminded Sharon that she wasn’t alone. Rick hadn’t left her to deal with the kids the first time and she knew he wouldn’t now. That made the enormity of this whole process easier to deal with. “I love you, you are a wonderful man.” she told him returning his smile.
For the second time in twenty four hours, he said “I wish everyone felt that way.” with a chuckle.