Posted by Yes This I Know
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?
Posted by Yes This I Know
I’ve wanted to write this post- about why we declined home nursing- for a long, long time. But it is a complex, hot-button topic in the special needs community, and honestly, even thinking about our brief 3-week experience with home nursing makes me exhausted. I am writing now because soon we may have a limited amount of home nursing again. And I’m already exhausted by the problems that have arisen as a result, even before any nurse has stepped foot again in our home. So, for parents of special needs children wrestling with the problems of having home nursing versus the problems associated with not having it, here are the reasons that we declined it. In an upcoming post I’ll share why we are seeking some limited nursing after 2 years of enjoying not having it. These reasons are personal, and they won’t represent everyone’s experience. They are in no particular order below. Some of these issues are more important than others, and not all of them are insurmountable in themselves; keep in mind we made our decision based on the entire risk/benefit picture as a whole.
Invasion of our space
My husband and I are introverts. Being around people other than our little family- even nice, considerate people- sucks our energy away. A great picture of introversion is here. I time and manage my social interactions very carefully so that I have time to recover. Having someone present in my home would drain me to the point of desperate need of recharging in isolation, and I don’t have the time or energy for this depletion and recharging cycle.
Affecting the dynamic with the kids
Most people would be surprised to find that Greg and I are very silly with each other and the kids. We make up songs all the time with ridiculous lyrics about what we’re doing or substitute the kids’ names in familiar songs. We wrestle and tickle and pretend to be dinosaurs. We dance to rap music. And one of my favorite parts of the day is in the morning when Miles wakes up in his crib, which is in the master bedroom attached to our bed; Rowan and June pile onto the bed next to his crib to say good morning, sing, pat him, and jump and roll and climb over across and under the crib and bed. We spend a half hour just lounging and playing as I get Miles ready for the day. We don’t do these things if someone else is in the house; their presence changes the dynamic because they are not part of this silliness we share as a family. It’s worlds colliding; it’s like someone staring at you while you eat. I think it would steal the magic of the moment to pause and say to a nurse, “Wait in the living room while we do our good morning silliness tradition,” and, alternatively, we certainly won’t invite the nurse onto the bed for a pillow fight.
Affecting behavior with the kids
Every parent of a toddler knows that they behave very differently with an audience. Having someone present in the house affects all of the children’s behavior as they dutifully test whether the typical rules still apply, and whether they can get a reaction out of the guest or a novel reaction from the parent.
When we had nursing overnight, we had to put our two large dogs in the bedroom with us so that they wouldn’t bark or bother the nurse, and if they did bark, it wouldn’t wake any of the kids. Having 150 pounds of snoring dog in our bedroom to trip over in the dark did NOT provide me with the restful sleep that night nursing was supposed to offer. Other logistical problems- where to park, where to take breaks, where to store “lunch” and how to prepare it quietly at night, the necessity of a landline to “clock in/out,” and storage of the nursing company supplies in June’s crowded room. Also, the necessity of being at home when the nursing shift starts and ends is a huge logistical problem as well as a killjoy; since it takes 2 hours in traffic to get to our appointments at the children’s hospital, that means we would need a four hour buffer around both the shift start and end times during which we couldn’t schedule appointments. We also couldn’t swing by the ‘dinosaur museum’ down the street after an appointment or stop for ice cream/zoo/impromptu play date when the traffic stacks up on the way home, because we would need to shuttle the nurse back to her car at our house in time for her end-of-shift. (I hear that taking nurses hostage is frowned upon, even if they are provided ice cream.)
Privacy and security issues
I am a very private person, and home nursing posed various challenges in this area. First, neither Greg or I were comfortable walking around in underwear with someone in the house. So I had to dodge sleeping-dog land mines and put on pants every time I wanted a drink or snack in the middle of the night. I didn’t want to pump milk or breastfeed uncovered aside from around my little family, which amounts to a huge inconvenience when I was doing one or the other 7 times a day. (I fully support the right to choose to do so uncovered, but I personally feel most comfortable covered.) Since we were primarily using night nursing, which meant we were leaving our sleeping children unattended with a stranger, Greg and I installed cameras in June’s room, and neither the nursing company or a few of the nurses were comfortable with that (too bad!! and more on that in the nursing competency section). I am very protective of my kids’ personal health information, and you would think that with all of the HIPAA trainings that professionals have, that nurses would not take pictures of my their patient with their personal cell phone, but no. And lastly, having a stranger in our home unattended, Greg and I were conscious of protecting our financial information, money, checks, etc, which was challenging and a hassle to accomplish in our open-concept house.
Scheduling and accountability issues (Basically lots of problems and no follow through….feel free to skip to the next section for something more entertaining)
When we chose our first nursing company, I knew that the ongoing revenue available through home health often prompted fly-by-night, unscrupulous, or unreliable companies to pop up. So I went through the list of local companies the hospital social worker provided, and I eliminated any companies that did not have a website and/or a working phone number. THIS ELIMINATED HALF THE LIST. Of the other half, only one company followed through with my inquiry for information, and they seemed good; they were national, had an impressive intro folder, met with me at the NICU bedside and gave June a promotional teddy bear. I signed up with them, and then their customer service went to hell. The person who signed me up passed my case- but none of my input or preferences- on to another person, so my initial nursing schedule was set up completely wrong; I had to send nurses home who had traveled from across town, and they subsequently declined to come back. Nurse managers and administrators would show up 2 hours late for meetings with me. The nursing company would NOT correct my schedule despite the fact that I called to correct it every day. I had no nurses on the few nights I did want one (to get some extra sleep), nurses appeared when I didn’t want them, the company wouldn’t change my schedule to accommodate doctor’s appointments, and nurses sometimes called to cancel an hour before their shift start when they realized I lived on a far edge of town. Also, this nursing company NOT ONLY doesn’t do face-to-face interviews with the nurses they hire (they just need to pass a few tests at a central testing depot) but they ALSO don’t drug test their employees at any point. They said in regard to this, “We prefer to weed out problem employees in the real job setting because problems aren’t really evident in an interview anyway. But if at any time you have any behavior concerns or suspicions of intoxication, you can call us right away and we address it.” This is not a reassuring set-up for those of us who need *night* nursing when we won’t be observing the nurse. AND, unbelievably, the company was surprised and uncomfortable when we told them we would be using cameras in the home in light of their screening practices.
Now….you’d think it was just this nursing company or office, right? In the special needs forums, I see stories just like this for tons of different nursing companies in different areas. And recently when we initiated the process to start nursing again, I obviously chose a different company. Two actually. Number One- which is highly recommended by local moms and nurses- took my information then failed to call me back. After a month I called and had a face-to-face meeting with an “advocate” in their company. I provided him the documentation he asked for. For a month, he failed to called me back. I left another message. Nothing. I called another person, told them I was working with the “advocate,” and told the new person my story again. Both the new person and the advocate failed to call me back. Finally, I called a different nursing company, who took my message…and failed to call me back. I called them back and spoke direclty to the “new patient” coordinator. He failed to call me back. Then, when we were at the part of the insurance process when we had to choose a company, I reluctantly chose ‘Number One’ since neither had called me back and this one was at least highly recommended. SO. Insurance faxed paperwork. No one called me. I called and spoke to their “new patient” guy, and also told him I was supposed to be working with “the advocate.” Neither that new patient guy or the advocate called me back. I called back and found that new patient guy I spoke with had transferred somewhere else two days after we spoke. I gave the new-“new patient guy” A TALKING TO. Told him the. whole. story. again. I told him I wouldn’t do business with his company except for the fact that the other nursing companies had done the same thing to me so I’m circling back through the list. He said he’s very sorry, and I provided the paperwork he requested. AND THEN. He. didn’t. call. me. back.
At this point in telling the story I typically get questions of “How can this be???” “Have you just gotten really bad companies??” “Are you being really mean to them on the phone??” No, I’m not mean to them until they’ve screwed up at least 10 times. And as I said, problems abound across companies it appears from global forum feedback, though some parents I know have had good experiences. Why are bad experiences so rampant though? Maybe high turn over. Maybe poor training. Maybe because people in need of home nursing are usually guaranteed customers- they need the care whether the companies provide good customer service or not. I don’t know.
This is the most entertaining, but most highly variable reason listed. Many nurses, including my best friends actually, are wonderful, amazing, professional people. I’m sure there are some wonderful people who work in home health. We might have had one or two good ones, but they weren’t around long enough for me to be sure. I’m hoping that if we stick with nursing this time, IF WE CAN EVER GET IT STARTED, then we will find a good nurse or two who are a fit for us. But one of the main nurses that worked for us our first time around….
…..constantly mentioned, out of nowhere, that he is a doctor in Belize and insisted on wearing a white lab coat to his shift
….in addition to claiming to be a doctor, he told multiple grandiose stories about his nursing career, accomplishments, and how much money he has, but the stories conflicted with each other and didn’t make sense
….was visibly uncomfortable handling the bags of breastmilk I had pumped and stored, and frequently implied that I bought breastmilk from Craigslist that might have HIV in it
….told me stories about the mother of his other patient, who he referred to as a “hoochie mama.”
….regularly remarked on how nice our home is as compared to homes where he usually worked, which he characterized as “beneath him,” and subsequently asked how many bedrooms we have and about the layout of the parts of the house he didn’t need to access
….he stated that he quit working for one family because they installed cameras, which insulted his professionalism. I promptly explained that we were in the process of installing cameras. He wanted to know if they only monitor live or if they record.
…after cameras were installed, at the end of his shift he said that June’s feeding tube had come unhooked and soaked the bed during one feed (this is a common accident called “feeding the bed”, though it’s a mystery as to why he didn’t notice it for the entire 1 hour duration of the feed if he was next to her bed awake), and he bluntly explained that he tried to hide this fact by putting the soiled sheet at the bottom of the laundry. “But,” he said, “I wanted to go ahead and tell you since you’ll see it anyway,” he said, indicating the cameras.
…he stated that the reason he works pediatric night shifts is that he “doesn’t like to work hard.” Or he also said he got wounded in the war. And that this is the only way he gets to hold babies. And that he was frustrated that no school in the US would admit him to an MD program and that he had to go to Belize for medical school…but as usual that detail was not relevant to the topic.
And keep in mind, all of this occurred over a three week period of employment during which he worked two nights a week. So. It was an eventful three weeks of home nursing. The topic of medical competency and professionalism is huge, and I have plenty more stories, both good and bad, of our inpatient and outpatient experiences from the last 2.5 years, and plenty more to stay on the topic; this’ll do for our experience with *home* nursing specifically though.
I’ll go into more detail in the next post, but the final reason for us declining home nursing is that our private insurance company wouldn’t allow me to cut my weekly nursing hours down so that the limited shifts that my plan offers would stretch until the end of the year. I either had to use all of my hours up with extensive weekly nursing coverage such that I would run out of shifts in the first 3 months of the year and then be without any possibility of nursing for the rest of the year, or I could forego nursing shifts altogether. Is it at all surprising that I chose the latter?
So, WHY IN THE WORLD WOULD I SEEK TO GET HOME NURSING AGAIN?? you may ask. I’ll tell you in an upcoming post soon.