Recently I wrote about why we declined home nursing for the past two years, and a little about the mammoth of a topic that is being awarded secondary Medicaid. The fact that Medicaid requires us to use at least some nursing hours is a big reason why we are seeking it despite the long and varied list of reasons why we prefer not to. There is a second reason, though, which can be illustrated with the following analogy for home nursing.
Imagine that you were told that your young child would be involved in two car accidents every week for the foreseeable future. The exact time of the accidents would be random and unforeseeable, and they would vary in severity. However, the accidents would always occur in your own vehicle and on roads you are intimately familiar with.
Now imagine that you are told you have the option to let strangers drive your child around in your car, a little or a lot– all the time if you’d like! But they would handle those inevitable car accidents, in your car and on your roads, and tend to your child afterward for better or worse. But don’t worry! These strangers are licensed drivers of course! Now, as far as how long they’ve been driving, whether they’ve driven a car anything like yours, or EVER been in an accident, who knows- that varies. And they are completely unfamiliar with your roads and the traffic patterns of course. What do you say? Would you like us to send someone to take a shift?
This is what utilizing home nursing is like for us. To explain in more detail… For a while during the winter, June was having two emergency trach plugs per week (“car accidents”), some minor, like partial plugs, and some major (“varying in severity”) like full plugs or incidents when we couldn’t physically get a new trach in, during which June would nearly lose consciousness. These events were always unexpected, they occurred at night, during the day, in the kitchen, in the car, in the backyard… But, just like “knowing your own car,” Greg and I always instantly know how June is doing by the particular sounds of her breathing, her behavior, the condition of her stoma and lungs, and it allows us to anticipate these otherwise completely unexpected emergencies (or “car accidents”) somewhat. Just like “knowing your own neighborhood streets and traffic patterns,” we know by heart where all of her emergency equipment is located in the emergency bag and in the house, so no precious time is wasted fumbling for those things, and we know what environmental and circumstantial hazards June is likely to encounter that would make an emergency more likely. And most importantly, we are her parents, and our presence is an irreplaceable comfort to June when these emergencies occur.
A nurse has none of these advantages when handling an emergency (or “car accident”). A nurse is licensed by the state, but that is very similar to the general nature of being a “licensed driver” in this scenario. She may never have handled a trach patient (“a car like yours”) or may have had only trach patients with very different circumstances, such as a patient who is immobile on a heated circuit vent and never has trach plugs. As such, she may have never handled an emergency trach plug or emergency trach change (“car accident”) and therefore, even she doesn’t know how she will react. (No kidding here– other parents of kids with a trach have shared that their nurse became hysterical, left the child and ran out of their home screaming and waving her hands, when the child had a plug and a difficult trach change. Thankfully the parents were there, too, and they finished the trach change calmly in the nurse’s absence. In fact, when looking for a nurse this time, I strongly emphasized the need to perform well during an emergency, because June has them frequently, and thankfully several nurses have honestly said, ‘In that case, this isn’t a fit for me. I get jittery when a child is in danger.’)
You may say, “Wait, I thought this was a post about why you ARE seeking some nursing, not topping off the pile of reasons not to.” Well, hear me out.
My husband and I have been caring for June ourselves just fine for the last 2.5 y ears, “taking shifts driving,” so to speak. The only times we have not personally observed and cared for her are for 2 hours while Greg was at my bedside when we had our 3rd child last year (and June was with her medically-trained grandmas in the hospital waiting room, ready to text Greg if he was needed), and for 45 minutes here and there during inpatient stays when we left a dedicated attendant at the bedside with June so one of us could go buy food or rest. It has worked fine for us- it’s our normal, and we actually have a fun, silly and adventurous family life. But I realize: we’ve been lucky. There has never been a time when we were both unavoidably unavailable. Greg has always been able to take off of work when I’ve been sick or in the hospital. But eventually, there will be a time that, for some reason, neither Greg or I can provide the 24/7 monitoring she requires. And it’s also true that it is *healthy* for us to take a break “from driving” occasionally. So, when that time comes, I’d rather have someone available that at least knows “our car” and “our roads” a little bit than not at all. I’m reluctantly seeking some nursing, first, because it’s required, but secondly, because it will benefit June by establishing another care giver to ensure she has proper and safe care if we ever absolutely need it or in order to provide us some respite so Greg and I will have the endurance to provide her excellent care long-term.
Let the nursing adventure begin?