Lotsofquestions

Yeah, we were pretty desperate to come home. 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.

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.

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. 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.

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".

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.

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. 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.

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.

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?

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?