Now this is an interesting object. Not so much because of what it does – that part is simple, rather because of how much we rely on it not only to tell us what is going on, but for comfort as well. For those of you that might have missed the past two decades of overdone hospital based television dramas (or are just simply newer to the world), the monitor tells us what Liam’s heartrate is (green), what is oxygen saturation levels are (blue), and what his respiratory rate is (yellow). It also tells us – quite alarmingly – when they are not so good. The alarms on the monitor are also connected directly to the phone that our nurse carries around, so when they sound, so does her phone. That way, no matter where she might be – like tending to another patient – she instantly knows what is happening in our room. I would place money that if you hooked either Ahna or me up to a monitor ourselves, you would find an instant correlation between Liam’s alarm sounding and our pulse and breathing increasing.

The monitor is hooked to Liam through four different leads – but the discussion about those is being reserved for another short posting later. Turns out that we probably stare at the monitor the most, outside of Liam or each other. We check it obsessively and worry about it all the time. There is a saying in medicine that you should treat the patient, not the monitor – meaning that sometimes the monitor is misleading you. For example, the monitor may say that Liam’s pulse is low, but he looks fine and is breathing adequately (this happens sometimes, and is often attributed to him being a full-term baby). But even knowing that doesn’t ease the nerves when the alarm sounds about something. Things are just too fragile to easily dismiss anything that is happening – even if it proves to be only a small speed bump.

When we take him off of the monitor (baths, change of clothes, walks, etc), it’s like removing a security blanket for Ahna and I. Most of the time it isn’t a worry, but the moment that Liam starts to breath funky we long for the knowledge of what is happening. It’s a little strange to become so dependent on something like this, but we have found that we literally rest easier when we know that his vital signs are stable – and not just think that they are.

Some of these posts attempting to explain some things are going to be a little difficult, as we don’t know definitively what exactly Liam is able to do – all that we have to go on is what we think based on observation.

Two of the questions about Liam that come up most frequently are about his ability to see or hear. The short answer to both is that we just don’t know for sure. However, there are some indications that he has some sort of ability to see. For example, when you shine a light in his face (either intentionally via flashlight, or semi-intentionally via camera) he looks away or closes his eyes. Part of the time when a light is put in his eyes will they dilate equally, and part of the time they won’t. He will momentarily look directly at you, but rarely will he track anything. His eyes have been the only indication since he was born (outside of the EEG) of possible seizure activity, and that is still present today. There are even times when his eyes will pulsate up and down in opposite directions of each other – but we are completely unsure if that is symbolic of anything other than the severity of the brain injury.

They say that the eyes are the window to the soul, and with Liam they are about the only window to anything that we have. We cherish when he is awake and absolutely love the connections that are made by looking into each other. It’s hard to know how far those connections go, but there is no doubt that they exist on some level.

The question of hearing is a lot more abstract and even harder to know than is sight. At least with vision, there is a positive identifier, but sound is different. We haven’t been able to tell for sure if there is any ability to hear at all. There are some causal relationships that are present, like a sometimes increased heartbeat when music is played, or a sometimes response to a snapping of fingers just out of eye sight – but those could both be because of vibrations as easily as they could be because of actual ability to hear. Physically, the outside ear looks as cute as any baby’s ear would look, but it often suffers a little bit of flattening due to Liam’s need to primarily lay on one side or the other. It even occasionally gets folded over, but it always rebounds nicely.

The walk outside actually took place a few days ago (since then, it’s snowed), I just forgot to put a photo of it up on the blog. We made a quick break for the sunshine in the late afternoon, only to be met with cooler-than-expected temps and an increasing wind. Since the commitment had already been made to the outdoor trip, we toughed it out long enough to get some photos and get some sun on Liam’s face. It was a bit liberating for the three of us to be somewhere other than the room together. The other photo is also from a few days ago and just didn’t fit neatly into a previous post…

Liam’s medical condition…the more they stay the same, the more things change. With a prognosis like he has received, there really isn’t going to be any change to the diagnosis of injury. The daily stuff, however, continues to be of great concern and we are now officially worried about the direction that things have headed. His heart rate is still all over the place – at times in the 60s and at times in excess of 160. His breathing follows similar pattern – at times as low as 10 and at times in excess of 50 breathes per minute; and we have even increased one of the medications is was on for seizures. Being all over the place is placing us in a constant state of concern, and while there are moments that things are more stable than others, it’s still quite a ride. There are no two ways around the elephant in the room: Liam has a massive brain injury and he is very sick. We are just trying to sort through the rough and make the best of the calm.