Thursday, March 17, 2016

To Cath or Not to Cath

That is the question that has pervaded our lives since our son was born. He was born with vesicoureteral reflux and unfortunately has been prodded, pricked, and poked since he was born in order to determine whether his kidneys are healthy and functioning well (so far so good!), whether there is any obstruction (nope!) and whether he had reflux and what grade (and herein lies our tragedy). As my son's condition means that his urine flows back into the kidneys, he is both susceptible to UTIs and his UTIs are really kidney infections. Thus, every time our little guy gets a fever and presents no other symptoms (what I would do at times for a persistent cough or a snotty nose! and yes, I never thought I would wish my kid to have this, but life's vicissitudes take you on surprising paths and reveal surprising reactions), we worry about his kidneys. Kidney infections can lead to kidney scarring if they persist and are consistent and kidney scarring can lead to the loss of a kidney. Therefore, every time our son presents a fever and no other symptoms and unfortunately even when he has had viruses he has presented no other symptoms,  we are faced with the situation that if we do not investigate, we are risking a kidney infection worsening and causing kidney scarring the longer we wait.

I would say that my husband and I are pretty intelligent, competent people capable of making good decisions. However, neither of us are pediatric urologists nor even general practitioners, nor any kind of medical professional. We read medical articles on our son's condition and can understand the issues but never to the extent that a person who has studied this for years can. When speaking with a doctor, we are meant to hold the ultimate control, be the final bastion of medical decision affecting our son's treatment or lack thereof and yet, we are on an unequal footing. Maybe as a lawyer I'm trained to accept specialization and accreditation to the obviation at times of my intuition. I am consistently plagued by lack of confidence in my medical assessment, knowing that I am not a doctor. Yet I know my son better than any doctor. I know that every time he's had a UTI, he's been lethargic, had a very high fever that does not subside and presented with no other symptoms. For this reason and our caution, we've caught each one early and hope his few infections have not led to any scarring. However, what medical basis do I have to support my view that every kidney infection in my son presents with the same symptoms? Am I to rely on my intuition and common sense when in truth I am not a doctor? Surely they have more information to base their views on?  Now of course, doctors, in fact any professionals, being but mere people, are not infallible and make mistakes. It is unfortunate that we tend to forgive doctors less for theirs as their mistakes directly impact our bodies and our lives - and more so when it affects our sons and daughters and other loved ones.

Today I write this, eschewing work for a bit, to vent my frustration and my disappointment, as a sort of confessional catharsis, at not being able to protect my son and make the best decision for him. In barely a month, the decisions I made on his behalf have led to to two dry caths and I cannot forgive myself for this. A few weeks ago, on the eve of a family trip to Maui, my son's limpid eyes revealed in their sunken state that something was off. He had no fever but the next day it rose. We knew he was teething. We knew you that toddlers get fevers when they teeth (it makes sense, they're more prone to infection as the teeth shoot out of the gums, or at least that's what my common sense tells me), but when I noted his steady decline, his lethargy and the fact that his fever kept rising, I was at the doctor's that day. He presented no other symptoms and the doctor assured me that no teething toddler gets a fever of 105.8. That made sense. So as his father's ghost plagued Hamlet, the catheter darkened that sunkissed afternoon and I was again placed in our continual stygian loop - to cath or not to cath.

I read somewhere that humans make mistakes of judgement because we are too hopeful. I am not sure if I agree with this as a general statement. After all, I'm part Russian. More importantly, if infallible optimism is a human trait, it seems to be a very keen trait for survival. Whatever you can say about our species - and when you present us in a parade alongside other predators we may be the only demons that prey for profit and pleasure - we are survivors. Our fragile little bodies have taken over the world, for good or ill, but we achieved this conquest together and through hope (so that now the main predator we fear is our ourselves). For with no hope, we lose. It is a necessary if not sufficient element for survival. But I digress...

When it comes to our children, we cannot but hope. They are our hearts that spurted forth and grew limbs. They are more than ourselves. And so, back to my bag sample. The best scenario would be a negative bag sample. You can't argue with that one and it would avoid a catheter. Seems like a win win, right? Why not hope for the best? So we waited and waited until my son peed. It was positive. As a positive bag sample cannot be trusted for it can be contaminated by the skin etc and as the culture that grows may not show the actual bacterial menace, I was faced with another decision. Medicate on a fallible test (and possibly give him antibiotics which he doesn't need) or wait and cath? Wanting to avoid giving him the wrong antibiotics or antibiotics for no reason, I gave him water and we waited. When the doctor assured us that his bladder would have juice for the plucking, my husband and I decided to cath. Dry cath. That evening, we decided to simply cath next time.

Next time came a lot quicker than we thought. Right after our rescheduled trip to Maui, my son and I both got sick. I had congestion, a scalding throat and a piercing headache - but no fever. He was miserable, irritable, appeared to point to his head as if he had a headache and presented with a low grade fever that would come out in the evenings. Common sense and patient history told me it wasn't a UTI. We both had colds. However, after some days, I panicked that it could be a UTI. After all, I'm not a doctor. Even if the scales weighed in favour of a cold, the risk of not checking, of letting an infection continue and possibly scar, no matter how negligible the probability, was too great. Probability and risk are not evenly matched. In my opinion, the risk was too great. So went to the doctor. My son has developed a fear of the doctor's office and for good reason. He's been cathed several times there. This time, I came prepared with the decision to cath immediately if they suspected a UTI. Unfortunately, they could see no other symptoms and assured me that UTIs can appear with a consistent low grade fever. They wanted to cath. I told them my concerns, my assessment - he hasn't presented that way with a UTI, we both got sick at the same time etc and yet, the risk was there.

I asked the doctor that stayed - a doctor I had not seen before - whether there was  chance of a dry cath. I told her the one risk I didn't want to take (as any catheter insertion has the risk of infection and complications, albeit small and causes him great anghst) was of a dry cath. I didn't want to put my son through torture if we weren't going to get anything out of it. She assured me that he had not peed in the diaper and that there was no risk - not even a negligible risk- that if I had put on the diaper 3 hours before and he had some water - which he had - that it would be a dry cath. So I explained to my son my decision and three nurses came to cath him. As we held him down and I continued to explained why we were doing this to him, that it was for his good, to protect his kidneys, he looked at me desperately all the while, screaming, looking for protection. Dry cath.

I failed him once more. Wore, as soon as it was over, he forgave me. He crawled into my arms and looked at me with such love that I didn't deserve after failing him once more. Children are so innocent, so fragile, so forgiving. I was ashamed.

I was livid. How could the doctor tell me there was no risk of a dry cath? I completely believed her. He must have peed in his diaper and she didn't know (he was wearing conventional Pampers diapers, diapers that we don't normally use- we used cotton then compostable- and that I am in truth not competent in assessing). Maybe it was my training again. I never tell my client there is no risk. If my client were to ask me if they would suddenly start floating into the air, I would say, possibly, if the laws of physics were to change and they should check with a physicist and that it wasn't my area. No way in hell would I utter the words "no risk" - I like to use "negligible"  or "no appreciable risk" for life has taught me that nothing can be taken for granted. So when the doctor told me there was NO risk, I was baited hook, line and sinker.

There is nothing more stressful than when your kid is sick. My husband and I are lucky - many people have far greater medical problems to deal with. My heart goes out to those parents that face these hard decisions, that are put in such a pernicious predicament, that see the pain sear over their children's faces and feel helpless. It is a caustic cage of misery.

This morning both my son and I feel a tonne better and he has become his crazy monkey self again, which again leads me to believe that it was a mere cold. However, if he has a fever later in the day, the question may present itself..... to cath or not to cath.... the recursive curse of our pernicious predicament.







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