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Calling in the Cavalry (or Not)

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One of the silver linings to Max’s complicated medical history (see Our Journey) is that medical folks take him and us seriously when he complains. Since nothing is more frustrating than having a sick kid and not being able to get anybody to take you seriously, that’s a good thing.
It’s thankfully not that hard to get good emergency health care in the United States. Obviously anyone who is having trouble breathing gets right back in almost any emergency department in the country. With Max we have found even if he seems to be doing better by the time we get to the emergency room (like after using the epipens or giving benadryl for an allergic reaction) he still gets back for a quick evaluation by a doctor.
Similarly, I have found using the words headache or vomit in connection with the world shunt will automatically get Max triaged ahead of most of the waiting room at the emergency room. Max has always also gotten an almost immediate head ct and shunt series. Usually a grumpy neurosurgery resident also is immediately summoned.
While I am grateful for that level of caution, the flipside is that it can and does lead to a lot of interventions. I know the radiologists use the lowest amount of radiation possible. I realize the costs and benefits of any single test in these situations is almost always more benefit than cost. It does add up though. Sometimes it feels like noone is looking at the bigger picture. This point was brought home when Max was in first grade, and one of the MRIs they did to diagnosis his shunt failure showed an unrelated suspicious spot.
The spot was the size of a pinhead and both of his neurologists assured us it was most likely nothing, but there was an odd chance it was a mass. As a precaution, they wanted to do another scan nine months later to make sure the spot was not growing. It thankfully wasn’t but that was a lot of extra stress and expense. The unintended consequence was it made us more aware of how the more than dozen head CTs he had starting when he was an infant and had his first febrile seizure were at some level upping his cancer risk. I didn’t even let myself think about all the chest x-rays and shunt series. I did think of the collection of glow-in-the-dark stickers he had shoved in a drawer. They were the prize in the radiology department for sitting still during an x-ray. He had several, and he is not careful about keeping stickers or keeping them nice. The glowing visual there was just a little too striking.
Similarly, the steroids to prevent another allergic reaction while not a universal treatment usually made sense in the short term. I know I don’t sleep well when I think Max is at risk for a delayed reaction. If there’s any chance, even if it’s controversial in the medical literature, that the steroids reduce the chance of that, I’m all for it. When you factor in the number of times (last year it was twice) that he needs steroids to help get past an asthma flare plus the daily preventative inhaled steroids that starts to add up too. You have to pay more attention to the long list of side effects.
We haven’t even gotten to cost. We almost always meet our deductible for Max. We sometimes meet the out-of-pocket maximum but we try to avoid it and sometimes can if we can avoid the MRI machine. Considering how much attention is paid to it in the political arena, it is odd how uncomfortable some doctors get in practice about discussing the bill. I know it’s seemingly kind of uncouth or taboo to bring up, but it is a real factor sometimes. I don’t always think it should stay unspoken. Before Max’s last shunt revision a couple of years ago the surgeon who eventually performed the operation laid out several options one of which was transferring Max to LeBonheur in Memphis where he’d had his first surgery. The surgeon where we were in Arkansas said he wasn’t familiar with the type of valve in Max’s shunt and he thought we might be more comfortable with the more familiar other surgeon. I think all things being equal he was right and we would have been, but as I pointed out that would be a separate deductible and thousands more out of pocket for us. He and the resident practically flinched in unison at the mention this was playing in my decision making process. They then changed the topic back to something more medical before telling us to think on it and leaving.
I mention all this by way of background because all that previous experience can’t help but affect my attitude when Max turns up with new symptoms.
In fact, it was all swirling in the back of my head yesterday, when Max said his throat felt funny minutes after eating a chicken nugget. That his throat or tongue would feel funny or he’d have some hives after eating something is not that unusual of an experience around here. Dairy is hidden in a lot of unexpected places. Foods get cross contaminated even when we are careful. Those sorts of local reactions happen probably once or twice a month year round. A dose of benadryl usually clears it right up.
In this case, I dosed him up and went back to my lunch. Unlike other recent times though, this time he almost immediately began complaining his chest hurt. He was talking and not blue so I was a little alarmed but still figured it would probably die down in few minutes.
Then he started talking about needing to throw up, but he didn’t. Vomiting is a pretty typical symptom of an allergic reaction, although not usually one of his. Still, I went to get the epipens out just to have at the ready, although I was still pretty sure he hadn’t eaten anything new that would cause a serious reaction. The chicken nuggets were ones from the same bag he’d eaten with no problems the day before. He had no hives. He was breathing fine. His color was good. In other words, none of the other typical-to-him signs of an allergic reaction.
Now every allergist we have seen has said something along the lines of if you are wondering whether or not to use the epipen you just should go ahead. The rewards of catching a reaction before it begins to cascade by far outweigh any risks a dose of epinephrine carries. And yet using the epipens meant an automatic trip to the emergency room and probably several hours of observation and oral steroids not to mention having to buy new epipens (not cheap) and that was in the best case.
Adding to my relunctance, I also didn’t at the time have the family car. I have lovely neighbors but the idea of calling or knocking on doors was daunting especially with Max sitting right there continuing to complain. Just as I was pondering this, Max began to say that now his chest hurt worse. I asked him if he felt like he needed his epipens. He said he wasn’t sure. He still wasn’t having any obvious trouble breathing. No hives. He wasn’t turning blue or red. No feeling of impending doom. Yet he had the chest pain. His mouth was still kind of tingling, he said. He had almost thrown up, although threatening to do it on Claire if she didn’t move made me take that a little less seriously.
What we had here was the gray zone. I really was torn. If I had had the car, I probably would have waited. Since Jason had the car at work several miles away, I decided a middle step would be to call the EMT’s. I knew if I called the allergist, she would say go to the Emergency Department because she flat out told me that was her standard practice if someone called and asked if they should. I figured here I’d hold off on the epipens and let the EMT’s come help me decide if they thought he needed them.
We only live two blocks from a fire station. The truck was here before I’d given all the information. Max was still complaining but the firefighters agreed with me it didn’t seem to be all that allergy related. Chest pain without any other signs was odd. His lungs were clear. His blood pressure was fine.
When the ambulance crew arrived, they took his history, took more vitals (which were still fine) and offered to take him in, but by the time they had evaluated him and re-evaluated him, he was finally feeling better. I don’t know if it was everyone telling him he should feel better, or something (maybe a chunk of nugget) moved and he did. At any rate, I was feeling better about hanging back and avoiding a long ordeal at the emergency room. The ambulance crew assured me they understood and could be back here in two minutes again if the situation worsened.
It’s great to be able to call in the cavalry when you need it, but it’s even greater to be able to call them off too. Knowing the difference is still a real work in progress here, but we’re trying to learn with Max.


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