Still adjusting to the new reality. Peter finally went back to school today, but only lasted 1/2 day before going to the nurse and asking to come home. Actually, he had pains in his chest multiple times during the morning, and finally his teacher walked him to the nurse because he felt it made no sense to keep him in the classroom. The pains aren't acute, but they're pretty constant. He says it hurts when he isn't breathing, and it also hurts when he breaths. He says the pain can be anywhere from his upper chest to his abdomen. When he's not feeling well at home, he keeps "plugging in" to me or Carl, wanting to bury his face and have his back rubbed. He's done that at least 5 times since I got home from my my first day of internship about 90 minutes ago.
The pediatrician refilled the albuterol for Peter's inhaler last week and we've been giving it to him quite regularly. Peter only needed his inhaler a few times in the past 10 years. It's not clear whether he really feels better afterward or not. He says "kinda". We have an RX for prednisone to give him next, but Carl is going to ask whether the doctor actually heard wheezing before he starts giving it. It's not 100% clear to me that we have a lung issue here. All we know is that it "hurts inside".
Prednisone is an immune suppressant, so I don't want to give it unless we're pretty sure of what's going on. It could also mask other things that might be going on. Steroids tend to increase a person's feeling of well-being. They eat better, and generally feel more perky. Peter could probably benefit from that, but I don't want to miss something more serious that might be going on -- and have it suddenly get much worse when we should have caught it sooner.
Peter is very close to a neighbor family who hadn't seen him in a couple of weeks until yesterday. After he came home, the other mother called to exclaim over his weight loss, and his lethargy, and the circles under his eyes. It all seemed to happen so quickly, she said. I know, I said. This takes some adjustment. I don't want it to be like this, but I have no control over this situation.
I would like to see Peter staying in school despite feeling icky some of the time, but unless that's what he wants, it isn't going to happen. When he's pulled some "I don't feel wells" to come home and play video games, or escape some schoolwork he didn't want to do, we've been fairly firm once we figured out he wasn't really sick. But he really does feel icky now. Carl thinks that Peter's best quality of life will come from letting him choose how he wants to spend his days from now on. I have been wanting to keep everything "normal" as long as possible. "Normal" kids don't get to choose whether they go to school or not.
I think Carl is probably more right than I am, but it still feels odd "changing the rules" when Peter still doesn't know what's going on. The pediatrician's nurse called today about palliative care and family support, but I wasn't here to take the call. Hopefully I'll catch up with her tomorrow. I feel like Peter needs to know something more than "my blood is sick" -- though I'm not sure what. And maybe I'm wrong. I hope I can find someone out there to give me some guidance, or possibly to even talk with Peter without me there. I sense that he is anxious and scared but he shuts down when I ask any questions. Maybe he would open up more to a 3rd party.
This is the new normal. I keep hearing what a heroine I am for my strength and courage and blah-di-blah. I don't know a single one of my friends who wouldn't do the same thing if they were in my situation. If you love your kid, you find some part of you that you never knew was there and you do everything you can to extract the most good from a really bad deal. My courage feels to me like the milk that fills new mothers' breasts and spills out when their babies cry. My body is making it for Peter.
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