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.

Four weeks ago today we woke up at home wondering if a baby was ever going to come. Ezra was five days late, so as the due date had already come and gone, we anticipated another long few days. Turns out we had no idea what the following 24 hours would bring and how it would so dramatically change our lives. So here we sit, 28 days later still wondering what each day will bring.

Every day at any moment carries with it a unique and sometimes unexpected set of challenges. Sometimes they are emotional ones and other times they are physical ones. They always seem to come with little or no warning and they always seem to take a lot out of us. Liam’s day yesterday was filled with the same up and down inconsistency that has defined the previous few days. Earlier yesterday, his heart rate was all over the place, and then that was replaced last evening with his oxygen levels doing the same thing. He also naps a lot – and has become more lethargic than we have seen since he was brought out of some of the early on sedation. We continue to search for the answers to all of this, and the staff is working hard to help us out.

No deep, emotional, medical based posting here. Just a few pictures and a few thoughts that present themselves when you have the chance to sit in the same room with the same people for weeks on end.

Thought/Observation: when you are getting on an elevator that you have selected to go down from the 2nd floor, is it necessary to look at the buttons when you step in? Seriously, where else could you possibly be going? Next time you ride an elevator, watch people…it’s almost a 100% thing. 2nd floor going down? Look at the buttons.

Thought/Observation: green means good and red means not good. At least this is the standard societal understanding of these colors. However, here at Children’s it’s somehow backwards. There are two different stickers you get when you come and visit depending on whether the patient is in isolation or not – you guessed it, one is red and one is green. Turns out that some bizarre thought pattern allowed for the green sticker to be assigned to those in isolation and the red sticker to those with little or no visitation restrictions. It’s backwards and even after three weeks + here, it still confuses me.

Next thought: It would be nice to own a company that makes casters. Seems like you could make a living just selling to hospitals.

Forced observation: it’s good to be reminded every once in a while (not by choice) that taking a cold shower can be shocking and refreshing at the same time….and that you need only a few short minutes to clean your body when faced with a time crunch.

Final observation: like looking at the clouds, you stare at something long enough and familiar images start to appear – like a city skyline on the floor.

I know that we have talked about it before, but as I selected the photos for this evening’s posting, I again realized that there are two different colliding worlds in existence right now: one that is easily visible and one that is not. We can lay with Liam or look at the photos and see something completely different than what is actually happening inside of him. The photos and video show one side of that equation, but you can unfortunately rest assured that things aren’t as good as they appear: on top of what he has already faced, the struggles and issues that were mentioned in yesterday’s posting have continued today. Last evening and again this evening proved to be rough for Liam, and we are searching for how to help him through this. We are also searching for how to get through this ourselves, as we are sometimes helpless to the limits of body and medicine. As a parent you just want to make things better and take all the difficulties away…unfortunately there are times when you can’t do either and you are forced into doing only the most basic of things – like loving your child by wrapping your arms around him and holding on tight.

Liam is resting comfortably as we talk. Which is part of a recent trend…he is sleeping a whole lot more and his awake time is substantially less during the past two days than it has previously been. There are several theories on why this might be happening, so it’s a matter of sorting through them and figuring out what might actually be causing the tiredness. By and large, his vitals signs remain mostly stable – with a few hiccups in his heart rate that have self corrected with time. The heart rate issue is a new one, again unsure of the reason, but might be related to the sleepiness.

Ahna and I have taken turns visiting home during the last couple of days, and we are hopeful to both make the journey tomorrow sometime if Liam stabilizes enough to make us comfortable in leaving for a few hours. Otherwise, we have spent this cold and snow spell mostly inside and warm – and not complaining about it like everyone on the east coast (sorry friends, but the news coverage is getting old). Also on that note, I saw a satellite picture of the US this morning that showed that every state but one has snow on the ground. Weird. Click here to find out who doesn’t.