Here we go again

My timing on the last blog post must have been some sort of premonition. As with every hospitalization, there always seems to come a point when doctors stray away from the original reason of the admission, this time due to a blood and trach infection, to a sudden interest in Wyatt’s breath holding abilities. And then from thereon out it always turns into a snowball effect that brings out the most stubborn scientists in even the best doctors. Don’t get me wrong, I am scientifically minded also and I wish there were a concrete answer and a set treatment plan for Wyatt’s breath holding episodes because those are the most difficult part to deal with daily. And it certainly tends to start out well when a new doctor joints the team of fascinated spectators of the Wyatt Olympic Breath Holding Event. But when you stare at data long enough it can get the best of you, suck you right into the narrow medical analysis mode, and you fail to see the patient side of things. Basically what happened is this: The EGG showed what we, as his parents, already knew. There are no signs that anything medical is causing Wyatt to hold his breath. Once he starts the breath holding, his heart rate slightly starts to increase (opposite of what would be expected in a person with a normal autonomic nervous system response) and his EEG waves start to become more erratic while his oxygen saturations drop and he stiffens up and turns blue. Once he actually passes out and relaxes, that’s when his heart rate drops for a few seconds before climbing back up, his oxygen saturations climb back into the normal range also but his EEG waves actually give a near flat line while he comes back to himself and opens his eyes. The near flat presentations of the EEG waves for those 15-25 seconds while Wyatt wakes back up out of the breath holding episode is what set off major alarms in the mind of the new Neurologist of course. Then that once again started the conversation of the possible risks of brain damage with each episode and the need to investigate the sequence of events further to be able to medicate appropriately. Oh boy did that open a can of worms again that I am so tired of discussing. What was unclear in the EEG is Wyatt’s blood pressure response during such an event. Therefore, the scientists came out and suggested to go ahead with a procedure to check Wyatt’s arterial blood pressure. To do so, he would first need to be sedated to place such a device and then Wyatt would need to have another breath holding event to get any real data. Let’s pause here for a second.  If we’re so worried about the potential damage to be done by his breath holding and passing out, why are we suggesting tests that require us to make him mad enough to cause him to hold his breath? Are we the only ones who have a problem with that contradicting approach? So the good doctor’s reasoning, while well intentioned, is that even if we can’t prevent the breath holding, maybe we can gather enough data to map out the sequence of events that happen as a side effect of the breath holding (heart rate climbing, falling, then climbing plus the unknown blood pressure response and near flat EEG waves), and then maybe we can give a daily maintenance medication to at least minimize these side effects. Again, so we want to intentionally cause more episodes, so that we may or may not get a better understanding of the potential risks, by continuing a bunch of tests that ultimately increase the risk of long term consequences by intentionally causing what is supposed to be avoided? Aside from feeding into the good doctor’s curiosity, I can’t see a good reason to turn my child into a guinea pig. As with every new doctor that joins team Wyatt, we have once again reached the point of trying to diagnose and cure his breath holding episodes. Let’s pause here again. Just as a reminder, the reason Wyatt had an episode on Friday that started this whole mess was that I told him to finish the food in his mouth first before he could have another bite. That’s an intentionally behavior, a two year old’s temper tantrum. But just for giggles, let’s hypothetically go with the idea of wanting to stop his episodes altogether because of the risk factors involved. There would be two ways to go about it. One, Wyatt rules and we always give in to everything he wants when he wants it and how he wants just so we don’t tick him off. Or our second option is to give him daily medication that keeps him drugged up enough to not care about anything which then also means he wouldn’t be able to function properly, progress developmentally or learn how to deal with life’s frustrations. Given these two options, I’d rather acknowledge the risks but raise a child who’s mind is not numb from daily medication so that he has a fair shot at developmentally staying on track and learning that life sometimes just simply sucks and you don’t always get it your way. So we once again sounded like a broken record and made it clear that we weren’t in the hospital right now to find a cure or to gather data. We were there to treat the acute illness and nothing more. So sorry doctors but you may not be the superheroes that fly in and fix everything because the thing you are trying to fix isn’t fixable. We choose to accept Wyatt for who he is even with all his brain farts as I call them and any potential future challenges, and we choose not to run every imaginable precautionary test simply out of fear of the unknown.

So I guess this is our imaginary line that we are not willing to cross.