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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?

It is standard for routine trach changes to be a two person event with any combination of parent(s) and nurse. Almost always single person changes are reserved for emergencies. You would benefit from more conversations with the clinical supervisor. It is part of her job to answer your questions as part of insuring that things go smoothly.

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Specializes in Parent.
7 minutes ago, caliotter3 said:

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.

I think you may be coming from a different place, or a different situation than I am. I was in PICU with my child, in a hotspot area, where the virus is a major concern. My agency gave me two choices. I could have this particular nurse, or we could delay his discharge while they advertised and hired for someone else. There were no other nurses that were "rejected".

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You would benefit by discussing your concerns with the clinical supervisor.

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Specializes in Private Duty Pediatrics.
48 minutes ago, caliotter3 said:

It is standard for routine trach changes to be a two person event with any combination of parent(s) and nurse. Almost always single person changes are reserved for emergencies.

We have no such policy. I find it much easier to do a trach change without help. I use my dominant hand to slip the old trach out back-hand and - using the same hand - slip the new trach in. It is much easier to do when I don't have to work around someone else's hand. I then hold the trach in place with my dominant hand while bringing the ties in place with my other hand.

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Specializes in Parent.
57 minutes ago, caliotter3 said:

It is standard for routine trach changes to be a two person event with any combination of parent(s) and nurse. Almost always single person changes are reserved for emergencies. You would benefit from more conversations with the clinical supervisor. It is part of her job to answer your questions as part of insuring that things go smoothly.

Absolutely, but I know that before I was able to leave the hospital with him, I needed to demonstrate that I could do it solo. With supervision, of course, but still on my own. First on a doll, then on my kid, and then later when the vent got added on my kid with a vent. So, if I can't be alone with him until I can do those things, it seems reasonable to ask the same thing from the nurse before she is alone with my child.

1 hour ago, Kitiger said:

We have no such policy. I find it much easier to do a trach change without help. I use my dominant hand to slip the old trach out back-hand and - using the same hand - slip the new trach in. It is much easier to do when I don't have to work around someone else's hand. I then hold the trach in place with my dominant hand while bringing the ties in place with my other hand.

For routine changes, we always have two people in the room, but one person usually does it, and one person watches. But we aren't generally doing routine changes in the middle of the night.

For emergency changes, if there's another adult in the house (and there always is because of covid now), then we usually call, but we don't wait for them to arrive.

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I personally think a trach/vent is of a higher priority than an infusion due to the ABC's.

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Specializes in Private Duty Pediatrics.

I do get it, though. OP was not allowed to bring her child home until she had a nurse for the IV infusion. The IV was something that they were not allowed to do on their own, while the trach & vent are skills that they have been doing all along. And they wanted to be home. In her place, I would have chosen a nurse that would allow the child to come home.

However, OP, why not start to teach this nurse about the vent? I know, that's the agency's job, but they aren't doing it. And you would need to be sure that the nurse knew their stuff before letting them go it alone, anyway. (You would end up doing at least some teaching, anyway.)

Or, is this infusion a one-time deal that won't be repeated?

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8 hours ago, Runsoncoffee99 said:

I personally think a trach/vent is of a higher priority than an infusion due to the ABC's.

I agree, but on the other hand, we've had a long period of time to develop our trach/vent skills. Plus there were not trach/vent experienced nurses available.

The issue isn't even the infusion, it's the specific drug. He's on TPN, so we have experience with infusion.

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Specializes in Parent.
3 hours ago, Kitiger said:

I do get it, though. OP was not allowed to bring her child home until she had a nurse for the IV infusion. The IV was something that they were not allowed to do on their own, while the trach & vent are skills that they have been doing all along. And they wanted to be home. In her place, I would have chosen a nurse that would allow the child to come home.

Yeah, we were pretty desperate to come home.

3 hours ago, Kitiger said:

However, OP, why not start to teach this nurse about the vent? I know, that's the agency's job, but they aren't doing it. And you would need to be sure that the nurse knew their stuff before letting them go it alone, anyway. (You would end up doing at least some teaching, anyway.)

Or, is this infusion a one-time deal that won't be repeated?

He's back in the hospital right now, and it's not clear whether he'll be out before this series of infusions is finished. If he is, the agency tells us we'll have a different nurse. During the six nights we were home, we had two different nurses, and the one who was full time on our case has been reassigned. Which I understand because she needs to earn a living, but if we're going to have a series of different people, then I don't see how I can train them.

If we come home, and he still needs the infusion, and they still insist on nursing, then I can train someone, but probably not right away. He's exhausted and apprehensive about strangers after a hospital stay. He really needs to sleep all night for a while and to have mom or dad provide care, rather than adjusting to someone new. A week later? Maybe we could try, but this time we didn't make it that far before we came back.

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