After a long day spent in Pensacola for Sammy's appointments, trying to figure out the origin of the sudden onset of the episodes he had over the past week, in hopes of creating a plan to avoid further life threatening concerns, it appears the specialists still find that our issues rest with his inability to effectively manage in "Fight or Flight" mode. His autonomic nervous system runs amok..yet again.
It seems our neurologist and cardiologist still think the episodes originate from a form of dysautonomia. This does not mean our pediatrician missed the mark by stating the event he witnessed might have started as a breath holding episode. He may have part of the trigger figured out but noone seems 100% certain on the entire chain of events. They think there is a misfiring in his brain that sets off a storm leading to bradycardia (very slow to no heart rate),a rapid drop in blood pressure, hypoxia and seizure. The trigger of this misfire is some mixture of external or internal stress, improper impulse control, involuntary breath holding, and hyper vaso/vagal tone. The behavior that seems like a seizure where his body is incredibly rigid and there is an obvious facial grimace and lack of consciousness, is likely a reflex anoxic seizure brought on by the lack of oxygen reaching the brain..not necessarily from not breathing but from a switch in how gas is exchanged and processed in his cells and is further inhibited from the heart not pumping it up to the brain at a fast enough rate. At least this is my understanding. The cardiologist said laying him down or him passing out and falling down should improve the ability to get blood into the brain faster as it stops fighting gravity. Stimulation with sternal rubs is key and getting to oxygen too.. but although hypoxia is a very important concern for avoiding brain damage, his concern is that the heart could stop beating and not resume. Sam has had concerning pauses in the past and we are now going to be watching to see if this remains a valid concern.
Our neurologist is ordering a continuous EEG to be done in their lab within the next week or so in order to see if we are able to capture an event. They don't think these are initiated by seizures but capturing one on EEG would bring confirmation. The Cardiologist has doubled his Glycopyrrolate (robinol) medication which has an anticholinergic effect by blocking the neurotransmitters which slow his heart rate. (Forgive me if my layman's understanding of these things is simplistic). But basically this medication lowers the vagal tone making it harder for messages to go out that slow the heart rate at dangerously low levels (a condition called Bradycardia). I like his cardiologist because he takes the time to explain things in a way that I can more easily grasp.
Until Sam's arrival I never even understood the nature of our heart rate and the delicate balance of our internal and biological rhythems. Everything has to be in sync or a traffic jam can occur. I liked how he described the heart as having one main job to do.. just to keep pumping and how the brain and nervous system are really the parts who act as the back-up pacemaker to ensure that the muscle pumps at a rate within the upper and lower limits. SO if the heart gets to pumping too fast or slow and that internal "fight or flight" is kicked into gear, the pacemaker or autonomic system needs to put things within the safe range. Sammy's does not always do this effectively and so if he decides to get mad and not take that next breath or take too many breaths, his internal autonomic switch needs to lay out the safe "fight or flight" limits but it seems to fail him and his heart rate plummets further dropping his oxygen saturation levels and bringing on a host of scary symptoms.
If on the new levels of medication, Sam has another episode than we will begin a 30 day holter monitering where an EKG is recorded during his events and based on those results, we might have to reconsider the pacemaker. This has been helpful to his Dr in the past. The pacemaker was advised a year ago for Samuel when he was having so many of these events but we saw the Robinol working and we opted to avoid the risks of major open heart surgery as it is with the placement of the pacemaker in an infant. The vessels of an infant are far too small for catheterization that is used on adults. This means the pacer has to be placed directly against the heart and will scar to the heart over time. The procedure is risky and I can't even imagine how we would feel doing this after seeing him nearly die following lesser procedures. This might also mean he would need more surgery later to change out batteries etc.. But that is getting too far ahead to consider right now.. for now, I will try to focus on the medicine changes and pray for no bad side effects. Those in of themselves are enough worry for this week. I wish I could handle things with more calm and grace, but honestly I don't think I could be anymore nervous after the stress of last week. I just don't want to see him having episodes so often as he did a year ago. It was a crushing time for me. On top of this, we are having normal family stresses of a new baby and such and I just have to keep remembering what is most important.
That said, I think my own "fight or flight" abilities are incredibly weakened lately. It would be so nice to say I have found the profound peace, the smooth ride (if you will), that I have so often sought with my planning and daily prayer... but I am just not there yet. When road blocks appear in my path or unsafe driving conditions loom ahead, I either take off in the opposite direction or worse I see red and can't even read the road signs pointing out the best route. I speed when I should slow down for dangerous curves and I find myself staring in my rear view mirror at things behind me that can't be changed. I lack the skills to survive when stranded on the side of the road and I can't seem to "fix" a single engine problem, let alone, change the tire when it blows. Basically, I lack the road savy skills needed to make this cross country journey alone.. so I find myself taking a lesson from Sam.. I will have to let God take the wheel on this one.