“Sitting here in the wee hours of the morning, knitting as I rock in a rocking chair while my little patient sleeps a few feet away in her crib, one thing is clear: I have turned into the ‘quiet old lady’ from Goodnight Moon.”

This Wednesday marked my 17th anniversary working in medically intensive home health care (MIHC). It’s a specialized field that most people aren’t typically aware of and is different from hospice or visiting nursing. Basically, “medically intensive” means the person receiving care is dependent on medical interventions or life-sustaining equipment that require them to be monitored one-on-one by a nurse at home. An example of a person needing such care would be Christopher Reeves, who was dependent on a ventilator after his spinal cord injury. While a visiting nurse (or home health nurse) may come to a person’s home and provide care for 1-2 hours and may see several individuals a day, a MIHC nurse spends a full 8, 10, or 12 hour shift caring for one individual. I am employed by an agency whose name I won’t disclose here. I have been with them for all of these 17 years.  

I used to work with adult and pediatric clients (patients), but 13 years ago, I decided to focus solely on peds/kids. I also decided to work nights. Yes. Consciously decided. I am a true night owl! Working day shift…having to get up at 0-dark-thirty…was brutal. I tell people all the time that I’d rather stay up to see the sunrise than get up to see it. Nights have been a great fit! This was proven to me again two years ago when I was recovering from surgery. I just decided to let my body tell me when it wanted to sleep, and consistently found myself going to bed around 4 or 5 AM! But I digress.

The children I work with (you’ll see me refer to them as “kiddo” or “little one”) require care for a variety of reasons, from muscle disorders to airway anomalies to cerebral palsy. Each child is different, even ones with the same diagnosis. I counted it up a few years ago and figured then that I had cared for around 25 different kiddos over the years. Currently, I work with three kiddos, though I am trained on a few more cases as well. The kiddo I was with Wednesday night is a preschooler with a muscle disease who has a tracheostomy and ventilator as well as a feeding tube. Tonight, I’m with a kiddo who also has a trach and feeding tube due to an airway annomalie, but is otherwise a typically developing toddler. She is doing well and may graduate (not need nursing anymore) sometime next year. My third “kiddo” is my one exception to the kids-only rule. She is in her 20’s and has a trach, ventilator, and feeding tube due to a neurological disease. I’ve been with her for 10 years. She’s a hoot!

So, what does a typical shift look like? It depends on the kiddo. Wednesday’s child was pretty “heavy care,” meaning she requires a lot of interventions, from airway management (suctioning, nebulizer treatments, etc.) to position changes every hour or so. My shift tonight is rather “light” by comparison. This little one is independent as far as positioning goes, so it’s mostly observing and intervening as necessary (clearing mucous from her trach, scheduled feedings). Being a typical toddler, the hardest thing about caring for her is that she can, and sometimes does, fight my efforts.  I use my eyes and ears a lot as well as a monitor keeping track of my little one’s oxygen level (all my kiddos have this). I tell my friends that, in my line of work, a good night is often a boring night. He he. If my kiddo slept well and nothing out of the ordinary happened and they didn’t require care beyond what is usual for them, it’s a good night. 😉 So far, tonight has been a good night.

One response I get frequently when I tell people what I do is, “It must be so hard to work with sick kids.” To which I always reply, “My kids aren’t sick,” and, for the most part, they aren’t. Sure, like everyone, they can occasionally become sick, but their general, baseline state is not “sick.” They are “differently abled” or “medically fragile.” Sometimes, it is hard, though. When one of my kiddos gets sick, they can become very sick. It can be scary! When a child is in pain, and the available interventions don’t seem to work, that is hard. It doesn’t happen often, but I did have one child who seemed agitated or uncomfortable at least 50% of the time. She was nonverbal and significantly delayed, so she couldn’t tell us what was wrong or how to help, and nothing we did seemed to ease her discomfort. That was very difficult! Cases like that, at least for me, are rare.

Another response I get when describing the kids I work with is, “Oh that’s so sad.” Well…no, not really. At least not most of the time.  While their diagnoses may affect their physical or mental abilities, the kids I work with don’t generally seem to be bothered much by them. By that I mean that they are…well…kids. Their normal is their normal. It’s important to remember that. It’s important to remember that they are not their diagnosis. They are kids, first and foremost, and it’s vital to be able to look past the equipment, past the disease, and see the child. (That’s actually true for adults as well, btw.) My kiddos are sometimes happy, sometimes sad, sometimes silly, sometimes mad just like any other kid. Some go to school. Some are too young or too fragile to do so. Some, the very littles, need to be held and rocked in the night (yay!). As far as it  being sad goes, I’m sure their parents have times of grieving, and as my kiddos grow, the ones with lifelong diagnoses may experience times of grieving, too. Supporting them through those times is part of my job as well, but generally feeling sad or sorry for them is not. I hope that makes sense and doesn’t sound calloused or harsh. 

Hmm… I seem to have gotten on a bit of a soapbox there.

Anyway, that’s my job in a nutshell. I enjoy my job, and, after 17 years, I’m not too shabby at it. Can I see myself doing this indefinitely? Maybe, but I don’t even know what I’ll be doing this time next year…or tomorrow, for that matter. Only One knows what my future holds, and He’s not all that into full disclosure. 😉 For now, I’ll keep enjoying what I do…and the crafting/reading time it provides. That leads me to FO Friday. I shall leave you with a trio of baby hats I knit over the past week or so.

Have a good Friday!

~Janet