I just got off the phone with a nation-wide home nursing company. While answering the questions the recruiter had for me, about Littlest’s health, our family’s needs, days we need covered (and nights!), and all of that, the recruiter mentioned in passing that doing it for five years is a “really, really long time to go it alone.” I didn’t start crying on the phone (maintained at least some dignity before the nurses come and see me in my Lived Story) but after I hung up, and saw the assessment date on my calendar, it hit me that I have the possibility for day-to-day HELP. 

We’ve had a sibling live with us for two years to help with Littlest… we’ve had friends who stepped up to the plate and watched Oldest and Quietest while I took Littlest to doctor’s appointments or had hospital stays. We haven’t really been “alone” at all, but at the same time, there are limits to the weight of care I’m willing to put on anyone else. Things I have just done myself because I’m the only one who can do it. (Like mediport flushing… no one can get the needle in like I can, even oncology nurses have to do some finagled movements when he’s inpatient!) I haven’t ever had anyone who can answer his healthcare questions from a medical perspective, and a home nurse has the potential to do that for us. To provide us with that stretch of time where I can focus on Oldest and Quietest, where Joel can stay at work instead of switching off and on for appointments. (Nurses can gradually take Littlest to appointments and such.) 

I’ve had friends who had excellent nursing relationships; the nurses spelled the parents in the long inpatient stays, answering the medical questions and providing the child with a familiar face while the parents took care of things like sleep, sibling needs, and work. I see the potential for amazing things, and yes, I know there are some who have had bad experiences, but I’m confident we can find a nurse who will be a good fit. 

Some may wonder why it took us this long to get nursing. Some of it is because of insurance denying care (when Littlest got the trach and gtube), and some of it is because of the fact he was smaller, and we had someone already living with us. Now he’s in his own room, has more extensive needs (ventilator’s are supposedly an auto-qualifier for nursing), and I am needing to be freed up some for my business and taking care of the older two. 

It’s hard for me to accept help, I tend to be the “It’s my responsibility because I’m his mom.” type, but I cannot do everything. I cannot physically wake up multiple times a night, then take care of three kids during the day. I really need night nursing, but since there are no shifts available, I’ll take the day nurse and hope that gives me enough of a load off I can at least try to get the laundry done. Maybe. 

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