Hello, I am not a nurse, I'm a parent of a child who will be receiving private duty nursing. I hope that it's OK for me to come here and ask some questions.We're on our way home from the hospital as I write this. After we get home, a nurse will be coming to our house to work from 10 p.m. until 6 a.m.. My son receives a medication by infusion that requires a nurse's presence. My understanding from the agency is that they were not able to find a nurse who had both trach/vent and infusion training on such short notice, so the plan is that my husband or I will take turns staying to take care of the trach/vent, feeding tube, etc . . . and the nurse can take care of the infusion. My first question is about what kind of set up or arrangement makes sense. We have a large busy family, but everyone will be asleep except for the nurse and whichever parent is with my son. My son's room is immediately next to a sitting room with a TV and a couch, and close to the kitchen with a table, a fridge with snacks and drinks, a microwave, and a coffee machine. Is it reasonable to ask the nurse to use those spaces as he/she pleases, and let my child sleep with just a parent in the room? His anxiety about unfamiliar adults is usually high after a hospital stay, so he might sleep better that way, plus then the nurse could turn on the lights which I am sure would be better for him/her. But would you be comfortable with a position where you weren't in the room with the child for most of the shift? The next question is about the bathroom. We have a first floor bathroom, that is attached to my son's room, but I have some concerns about whether the nurse would want to use it. First, it's not as private as he/she might want. Secondly, since we just got out of the hospital, I feel like there is no way to guarantee that my kid doesn't have covid (he wasn't hospitalized for covid, and tested negative at admissions, but he could have been exposed while there), so perhaps the nurse would not want to share. We have a bathroom in the basement, that I could quickly clean tonight, and then set aside for the nurse only. If you were in this situation, would you prefer that, even though you had to go downstairs? Also, what precautions is it fair to ask the nurse to take for covid? We have a supply of N95 masks (my husband's family business involves commercial painting so we had a huge supply when this started, we donated most but have kept some because of my son's needs). Could I give one to the nurse each shift and ask her to wear it when he/she is in my son's room? Also, are there precautions you'd want a family to take? I think that we've taken as many precautions as we possibly can to keep the virus out, but we could have brought it home from the hospital. Are there things you'd want us to do? Wear a mask when you're in the room (parents can do that, mask probably won't help trached kid)? And finally, are there things I should be thinking of, but haven't?
Kitiger, RN 1,820 Posts Specializes in Private Duty Pediatrics. Has 44 years experience. May 23, 2020 As an agency nurse, I would have to do a beginning assessment, which at the minimum would include temp/pulse/respirations, lung sounds, assess the trach site, verify back-up equipment, vent check, check the IV site and equipment, etc.I do not understand how it would work for me to ignore the trach/vent and only deal with the IV.Is the IV continuous or is it timed, like every 6 hours? Have you been taking care of your son with the trach & vent all along, or is all of this new to you?Along the same lines, if the trach/vent is long-standing, why haven't you had nursing help in the home?
nursenmom3 86 Posts May 24, 2020 I have no advice, I just wanted to say that I am glad you are home, and I hope you everything goes smoothly.
Lotsofquestions 9 Posts Specializes in Parent. May 24, 2020 He's had the trach and the vent for a while. The number of hours on the vent has kind of creeped up, and we just kept adjusting. He's qualified for nursing since he was tiny, but we just always were able to handle his needs in the family, so we did? We've had short term nursing for things like a new procedure or to do a short course of meds, but they were always visits not full shifts.The nurse turned out to be one we knew, who works for our home health agency, She did a full assessment at first, which was fine, but she let me do a lot of it and watched and recorded. So, I took his temp, for example. Then she started the infusion and went to the sitting room so I could put him to sleep. He's always nervous about strangers after a hospital stay, and given that we'd gotten home 3 hours earlier, it was a lot for him to wake up to a stranger in the room, but she was really gentle and went slowly which was perfect. Then she stayed in the sitting room while I put him to sleep, and every time she could hear that something was up (e.g. suction, or me up giving him g-tube meds, or an alarm from the vent) she'd pop her head in and just check that he was OK, quietly so she didn't wake him. And periodicially, she'd pop in to take his temp because that's been an issue. Then I went to bed and my husband took over. He said she checked him over in the morning again before she left. Does that sound normal? I don't know what she did in the room. She didn't turn on the volume of the TV, although I told her she could, but she could have watched with closed captions or read or knitted or something, I guess. I hope she didn't get too bored! She came quickly when there was an alarm, so I don't think she had headphones. I made her a pot of coffee when I came, and some was gone, so I guess she went in the kitchen to do that, but she must have been very quiet. I still haven't figured out the bathroom. Ideas?
Lotsofquestions 9 Posts Specializes in Parent. May 24, 2020 Oh I missed your question about the IV. It's one infusion lasting 6 hours. She's here 8, so most of the time it's infusing. So she did the initial check up, then started it, came back a few times to check on him. Stopped it, waited a couple hours, checked on him and went home.
guest1143647 163 Posts Specializes in Peds. Has 19 years experience. May 29, 2020 Why can't she give the gtube meds?I do not mean to be rude,but personally I think it might be easier for you to have a trach/vent nurse vs one that only does infusions.If your son needs you to monitor the infusion,and it runs over six hours,you can start it,leave the room for five hours,and get a nap vs being up all night
caliotter3 38,333 Posts May 29, 2020 Things are being complicated by only having the nurse there for the infusion. Any nurse capable of managing the infusion is capable of performing all care. You and your husband should be sleeping at night. The nurse on duty can summon you for problems. When I am on duty I tell my clients that I prefer to be in the room because I am responsible for observing my patient, although spot checks are acceptable as long as everything is going well. Relying on alarms only can delay response time or otherwise cause a problem. Any situation you can work out is fine as long as the child receives the care and all parties are comfortable. In essence you call the shots in your home. The nurse can inform you when they do not agree with something in total and do not want to comply. Otherwise they do what you want and document any differences or discrepancies.
caliotter3 38,333 Posts May 29, 2020 The nurse’s employer should be supplying her with masks. Discussions and plans for adherence to special behavior should be taking place, I.e. hand sanitizer and soap readily available. You have a right to ask the nurse about their activities outside of your home so that you can disperse any misgivings. My clients asked me. They go nowhere, the other nurses and I go nowhere, the patient goes nowhere, so there is less worry in the household. If the nurse works in other homes, particularly where there has been exposure, you should know that and all should act accordingly.
caliotter3 38,333 Posts May 29, 2020 It is acceptable as long as all concerned agree, for you and your husband to actually provide on the job training to a licensed nurse to get them up to par on vent and trach management for a night shift. Many home care nurses will tell you that they got their vent and trach training from parents of a patient. However, you should insist on heavy involvement from the agency clinical supervisor. As your child and your family navigates through home care over time, you will find yourself showing a newly assigned nurse how you do things anyway.
Lotsofquestions 9 Posts Specializes in Parent. May 29, 2020 14 hours ago, Runsoncoffee99 said: Why can't she give the gtube meds?She could. I assume she's trained to do that, and if not that's easy. But if I'm already there, and awake, and watching, it's just easier to do it myself. 14 hours ago, Runsoncoffee99 said:I do not mean to be rude,but personally I think it might be easier for you to have a trach/vent nurse vs one that only does infusions.Our agency did not have anyone available. And they wouldn't authorize the med unless it was administered by a medical professional, so since we really really wanted to bring him home. For all the reasons why one normally wants to bring one's child home, and also because of the risk of covid, we took what was available, even if it results in this bizarre situation. I'm not comfortable leaving my kid with someone who tells me that they have zero experience with a trach or a vent, besides what they had in school. I feel as though, if I left and went upstairs to sleep, and then something happened, that the amount of time it would take someone who doesn't know him to realize there's a problem, try to help, realize they didn't have the skills, wake me up, and for me to get there, would be longer than the 90 seconds we have in an emergency. 14 hours ago, Runsoncoffee99 said:If your son needs you to monitor the infusion,and it runs over six hours,you can start it,leave the room for five hours,and get a nap vs being up all night
Lotsofquestions 9 Posts Specializes in Parent. May 29, 2020 12 hours ago, caliotter3 said:Things are being complicated by only having the nurse there for the infusion. Any nurse capable of managing the infusion is capable of performing all care.Would you leave your child with a trach, with someone who'd never done a solo trach change? I can't understand how that's safe. 12 hours ago, caliotter3 said:You and your husband should be sleeping at night. The nurse on duty can summon you for problems. When I am on duty I tell my clients that I prefer to be in the room because I am responsible for observing my patient, although spot checks are acceptable as long as everything is going well. Relying on alarms only can delay response time or otherwise cause a problem. Any situation you can work out is fine as long as the child receives the care and all parties are comfortable. In essence you call the shots in your home. The nurse can inform you when they do not agree with something in total and do not want to comply. Otherwise they do what you want and document any differences or discrepancies.
caliotter3 38,333 Posts May 29, 2020 I did not say I would leave my child alone with someone who had never done a single person trach change. You interview any proposed caregiver and decide who you want to work there. That is a given and it is assumed this vetting has taken place prior to the info addressed in this thread. Sometimes parents will reject a fully qualified nurse with decades of experience. And sometimes parents will still trade off being in the room even with the nurse in some circumstances. It is your prerogative to choose who you want to work with your child in your home and how you want this to work.
