About ten hours from now a film crew will be arriving at our house to film us for a movie to be shown to new parents of children with trachs and vents, and possibly nurses and doctors, about the day-to-day life of a vent family at home. We’re honored that the VIP clinic (Ventilator Integration Program at Hasbro Children’s Hospital saw us as a representative enough family. We were originally approached about this filming almost a year ago so it’s nice that it is actually happening. of course knowing about it for so long was nice too since we had so much time to prepare and gather our thoughts. It should surprise no one then that I am sitting up tonight writing this because I’m nervous about the fact that I have no idea what I’m going to say.
I’m nervous for a few reason actually and I bet that number will increase by one more tomorrow when the camera is out and I attempt to “act natural” with a lens pointed in my direction. Then I’ll be really nervous.
But tonight I’m nervous about content. Let’s break it down reason by reason. . .
Reason 1. I don’t really think about it all that much. The movie is to show families at home with a child on a ventilator. Well we’ve got that but I don’t know what advice I could give because generally I don’t give the ventilator as much thought as you might think. It’s always just there huffing and puffing. Sure there is plenty of day-to-day, and week to week maintenance that Karin and I are more than capable of doing and sometimes we do but in a general sense we make our home nurses handle most of that because, well, because why the hell not? They are being paid to be here.
In terms of Liam’s respiratory health and my seeming lack of concern for his ventilator go we are far more leery of both Liam’s seizure activity/developmental/neurological status, and his G.I. Status than his ventilator settings. He’s rock steady on his equipment and even though we are working on a wean (half hour off the vent and supplemental oxygen the other day!!!) we are in no rush. Liam will show us if we need to give more thought to his mechanical little breathing buddy.
There are only two times that I consistently give the ventilator much thought. The first are during Liam’s first few breaths after I walk in the house after work. You can hear the vent from practically any spot in the house so from the kitchen, and before I even take my jacket off, I can hear by how rapidly he’s breathing whether or not the kid is asleep already after a long day of playing with mom or awake enough for some playtime with his Dad before bed. The second is every night when Karin and I move him into his bedroom when inevitably and no matter how many times we do it ( I suppose roughly 887 times give or take) something gets caught on something else along the way. Oxygen tube, electrical cords, the circuit attached to Liam, something’s gonna get caught on a table corner or a door knob or bed post and that’s when I swear and curse at that damn ventilator the best way I know how, but I really don’t think they’ll want to film that.
Reason 2: You’re doing it wrong. Before we could take Liam home from the hospital after his trach we spent more than a month training on things like suctioning, emergency trach changes, routine trach changes, vent settings and what they all mean, troubleshooting, a five-hour class on respiratory function and a special CPR class focused on trachs, you get the gist. I doubt it would have taken a month for Karin and I to learn but unfortunately Liam had other issues (The aforementioned G.I. As a matter of fact) that gave us more time to learn and grow comfortable with what we would need to do at home. That was more than two and a half years ago now and while Liam’s safety is never in any danger we have, like I’m sure every family in our situation has, developed our own shortcuts to some of those tasks. We’ve been told that they may want to film us doing some of those things. I doubt this film while showing how to successfully thrive at home with a vent really wants us to educate others on all of our bad habits. Gone are the days of saline bullets and wearing gloves. We’re so badass and confident the ambu bag usually stays wrapped in its oxygen tubing on top of the tank. Sure we (vent families) all end up relaxing around suction and if we need the bag for an emergency it’s not too far away but it is certainly a far cry from the textbook safety measures we were taught. Do they really want to film life at home?
Reason 3: I’m too lucky to qualify to give advice. The problem with asking me to give advice on how we do so well at home with Liam on a ventilator is that many of the things that make us so successful can’t be taught. We are able to do this because Karin is the best wife and mother for this family than anyone could ever ask for. Sorry, but if you don’t have a Karin running things at home then it’s going to be a little harder for you than it is for me. That’s just the way it is. We are able to do this because Liam is the best little boy that this family could have asked for. I know we all want to think our own kids are “special” and are “the best kid in the whole world” but the difference there is that when I say it I’m right. Again, my apologies, Like I said, I’m lucky. We are able to do this because Karin and Liam are both so wonderful that they put up with my bullshit and keep me around for some reason. I could explain all of that but it would just end up on the cutting room floor, you know, jealousy. I can’t say I would blame them, we can’t all be lucky.
So there are my big three reasons. I don’t know what to say because I don’t know what I could say that would really help. This is all completely normal to us so which little parts are the ones I need to highlight? We make it through by making it through and until you get home and try it, you won’t know what works for you.
Like everything else in the world, it changes from family to family.
But don’t get me wrong, I may be nervous about tomorrow’s ( erm . . .later today’s) shoot but that doesn’t mean I’m not also excited. I can’t wait to see Liam hamming it up for the camera as he often does, and I’m sure that once we start filming I’ll relax and hopefully do ok. Lucky for me I’ve got Karin who will of course, save my butt and make us both look good with a few pearls of wisdom. She is after all, the star of this show.
I’ll talk to you soon. Hopefully, after breaking a leg.