I remember how hard it was telling when something was wrong with my son’s health when he was little and unable to communicate. Even as he got into the pre-school and elementary years his speech and language delay made ordinary childhood ailments more difficult, and his hypoglycemia very tricky. I thought I’d gotten a lot better at it, and at 17 his speech has improved greatly, so have his communication skills. And yet, still we ended up in the ER blindsided by something that, looking back, I can see I missed completely. Flash back to the night in question after the Itzl.
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It’s quarter to 11, I’ve just gotten into bed, put the CPAP mask on, turned it on, planning to stay awake until the end of my show hopefully, but knowing if I don’t put it on now I’ll be asleep and end up forgetting it. My son comes through to use my bathroom because the light bulb has blown in his again and he forgot to change it before it got dark. Then my son screamed, and I was up and almost yanked the dang CPAP machine off the table before I remembered to take the mask off. He never screams like that. He’s always had a very high pain tolerance, to the point that he wouldn’t know he was injured until he noticed blood.
I found him on the bathroom floor curled into a ball, white as a ghost, sweating, shivering and moaning in pain. So I got him up (not easy he’s bigger than me now), helped him get dressed and got him settled on my bed while I looked him over, asked questions, and tried to figure out what was going on. He described it as a constant stabbing pain that seemed to be moving around from his kidneys downward, no real fever, but chills, sweaty, pasty skin… my first thought was kidney stones which I’ve heard likened to labor so far as pain factor goes. Definitely enough to break through his high pain tolerance. Ok, It’s 11:15 on a Friday night, this isn’t going to wait for the pediatrician on Monday, it’s too late to get anywhere by bus, and the urgent care is closed. The ER it is, thank the Gods for Medicaid!
Ok, decision’s made, but we don’t have a car... we can get there if I call an ambulance, but how are we getting home. We have money on the food stamps card, but that’s unhelpful. FloridaSNDad has $3 left in his account, Caedy has .88 in hers. It’s a $25 cab ride home from the hospital, and even bus fair would be $4 for the two of us, and that requires cash which we can’t get. Dad calls and wakes his mom. Luckily she has the money she can transfer over into his account, which is done before the ambulance gets here. I don’t know what we would have done if she hadn’t had it; probably called my mom next. Medicaid doesn’t always equate to access to care.
The EMT upon hearing his symptoms asks my son if he’s ever had kidney stones before. Seems I wasn’t the only one coming to that conclusion. At least I feel vindicated in the call for the ambulance. There’s a bit of a question about taking my walker or not, but upon hearing my breathing and realizing I would actually NEED it at the hospital and to get home, they find a way. I get to ride in the front, which is a first, usually it’s me and my crappy lungs back there on the stretcher! Then I hear my son yell again and tense up. I hear the EMT in the back with him telling him she was just checking his sugar. He doesn’t like needles, or sticks. I’m thinking… “crap, I should have insisted and ridden back there, this could get bad.” The EMT working with him is a petite woman, he hasn’t had a physical melt down in over a year, but he’s in pain and stressed and…. But then I hear laughter and relax. He’s been taught to respect women, which helps. But we’ve pulled a good crew as well, and she seems to have a way with him. He refuses to let her start the IV however, and she’s wise enough to comply.
So we get into the ER, and he’s babbling, joking around, but babbling. Clearly he’s in an over-stimulated manic phase, which has the potential for a full blown melt down. We’re at the nurse’s desk, he’s still strapped into the stretcher (probably a good thing) and the EMT and I are dealing with getting him checked in. Once again we get lucky. For one, the nurse knows me, I’ve been in that ER often enough with my own issues that I’m recognizable and known as pretty steady and not a panicky person. For two, she knows autism. So instead of sticking him in a hall bed, or one of the open, shared, trauma rooms in the main ER, she arranges for him to be put into a room that is usually reserved for the “fast path” minor cases (sprains, cuts, etc), because it’s an actual room, four walls, single bed, door that closes. So it’s quieter for him and quieter for the other patients if he does melt down. She also takes him herself, rather than getting an orderly to do it, so she can talk with the staff on that side and make sure they know about his autism, his pain tolerance, and how best to handle him. A big male phlebotomist comes in and gets the IV in one stick with minimum fuss. Last time, 6 years ago, it took 6 people holding him down, PROGRESS!!
The doctor comes in, they send a male, thank the Gods; he asks my son questions, pushes on his abdomen, asks more questions. He’s hyper and babbling still, but keeps it together. And then the doctor checks lower, and my son screams. Ok, not kidney stones. How was I supposed to know his one testicle was swollen? He’s 17! I don’t bathe him any longer. He never mentioned it, or that the pain was there other than a vague description of the pain being like being kicked in the balls, I hadn’t taken that to mean literally. He gets morphine and a muscle relaxer, they do more tests once those kick in and he’s calmed down significantly and a few hours later we leave with a prescription for Cipro and an anti-spasmodic to help with the pain.
Apparently, he’s had a bladder infection for a while, and bad enough it traveled down into that one testicle and infected that. He’s never complained of burning or pain. Never complained of frequent urination, plus he’s severely hypoglycemic and that’s about status quo any way. He always drinks a lot. I asked him the next day about other symptoms, and he keeps saying “no”. The only thing that may have pointed in the direction of a UTI was lower back pain, and I had just assumed that was because of the way he lays in my bed with his laptop, straining his back (especially as some Tylenol and a change of position seemed to fix it). He also says his urine was darker, but it didn’t smell so he didn’t think anything of it. So I’m not sure how to keep this from happening again.
It's been more than three weeks now since this started, and he's feeling fine again, he's finished the antibiotic and is no longer a vampire (can't go in the sun while on Cipro, you burn way too easily, especially in Florida). He doesn't see his primary doctor until the 21, but I think he's going to be fine. He doesn't have any pain any longer, and he says everything looks normal again.
I thought I had the hang of this; of watching him for symptoms of illness that he never mentions, because by the time he mentions them we’re in code red status. He doesn’t complain about pain, or sickness, or pretty much anything until it gets to the point when he ends up in the ER. Luckily he doesn’t end up in the ER very often. He’s the healthiest person in the house despite everything. Worse yet, if I still can’t recognize when he needs help before it gets emergent, how do I teach him to recognize it before he goes out on his own in the world?