Reflections: The hardest thoughts...

There have been a number things I've held back from writing that deal with some of the really hard parts of this journey. Things that have caused an underlying stress at what could be but we didn't want to cause alarm or additional stress and worry to others. These are some of those things. I struggled with posting this but have learned the struggles and anxieties are not unique to us. Its also important to name your struggles and so this has been a long reflection and process of naming some of the things that have been, and continue to be hard. It is my hope by sharing this that others on this journey would know they are not alone and, if you know us or someone else on this journey, that you may know some of the not so obvious struggles. If you struggle with anxiety or worry about us or other loved ones walking this journey, this may not be the best post to read, its gets harder as it goes. Proceed with that warning.

The readied response:

This little sheet of paper and the items in the tray above it may seem normal enough in a hospital room but they are both a source of stress and reassurance. You see one of the medications Eli received multiple times has the risk of causing an anaphylactic reaction. The trouble is, no past reaction is not an indicator of no future reaction. We were told such a reaction isn't really common but common enough that all the staff on the floor know a patient is getting this medication and no one is on break. The calculations and supplies pictured above are the prep to deal with such an adverse reaction without having to waste precious time figuring out doses and getting things ready. We were told the team has to walk a fine line between telling parents the risk upfront and causing the stress of knowing what could happen, but having them prepared for when it does, OR not causing the stress of to deal with the stress of a reaction that brings a whole team into the room in a matter of seconds. So we lived with the knowing he could have such a reaction, but the reassurance that they were ready and we'd just have to step back and let them do what they needed to do to save our son.

Code Blue:

If you've ever watched a medical drama you know a code blue is all hands on deck and there's lots of running and super-human feats to save the patient. If you've seen a code blue in a real hospital, you know its all hands on deck but with much less drama than on TV. Christmas Eve there was a code blue in another room. The alarms went off, every doctor and nurse headed, calmly, to the room for which the code had been called. I don't know anything about the patient, only that they, like our boy was in a state that warranted spending Christmas in Oncology ward. I walked by that room the next day and saw the door was still ajar. The bed was gone, Christmas presents were left on the bedside table unopened. Other items were in a state where they were obviously dropped because they weren't important in the moment the code was called. I don't know what the end result was for that family, I just know they were moved to ICU but the room left that way on Christmas Day hit me in the gut because its an ever present "what if" when you're in that place.

There must be a morgue:

Children's Hospital is the best place to be in one of the worst times that befall us as parents. The place that is so good, but you so desperately don't want to have to be there. One night, Dana came to realization that this is a hospital and hospitals have morgues, because not every patient leaves through the front door, fully recovered. In a hospital where everything is child sized and geared to brighten your day and make the whole ordeal a little easier, what does the morgue look like? The reality that we keep at bay for the sake of sanity is that not every child gets better, that some parents never walk out the door with their kids. We've met those families, the ones that know their time is short, the ones that one day just aren't around any more, the ones that have left the hospital life behind and going back to a life that has a hole that will never be filled again. 

We know more than one of the kids we were on the ward with have since lost their fight. Its not just a maybe, or a statistic of the percentage that doesn't make it, they are faces we know. Its a thought that sneaks up and levels you when you least expect. Its a nightmare that wakes you up in the night. Its a guilt that chews away at you when you are the one that takes your child home.