Continuity of care/Routines

[umcRN, BSN, RN]

I am looking for information about how other PICU/CICU's manage care for their chronic populations. We are trying to get better at this on my unit but are still struggling to a degree.

Have a kiddo now who is waiting for a heart transplant. He's not quite stable enough for the floor (our step down doesn't take much) but he's mobile. He's tenuous, one day can be going great but then something will set him off and he's almost getting intubated.

Said patient is two, he has a wonderful family who stay's with him 24/7. Lately we have been trying really hard to get them to come up with a routine for him, we know he will be staying with us until he gets his transplant and we need a way to make the next few weeks to months tolerable. However his parents, while interested in making a routine are also push overs - to the toddler. Behavioral issues are developing and his parents give in to his every whim. Makes it very hard to get a consistent sleep schedule down, play schedule, etc. He is fixated with water and wants to play with it all day yet wretches and gags when he does. If you take it away he has a total (typical two year old) meltdown so his parents instantly give back in. They jump when he wakes up, and lets him fall asleep at any old time on the floor. Therapists never know when to come because who knows when he might be sleeping. It's difficult on his parents and on nursing. We also have issues where consistency in nursing is not provided regularly so he winds up with float nurses or nurses who have never cared for him and need to learn all his mannerisms.

What do you all do for families/patients like this? How do you provide consistent care and routine? How do you get the patient on a routine when the family is not willing to enforce it? It's not really the nurses place to enforce discipline, bedtimes etc if the parents are at the childs bedside 24/7, i feel like they will think we disapprove of their parenting style, at the same time, he needs a routine! I feel like its going to be a very long few weeks to months if things continue as they are, he's already been with us over a month!

[NotReady4PrimeTime, RN]

That's a great question... one I wish I could answer. We don't do a very good job when it comes to chronically-critical kiddos. The patient you describe sounds so much like one we had here a couple of years ago. That little person was finally released from this world exactly a year ago. And to the end we were still trying to make a routine stick.

[imaginations]

Our OTs are pretty good at this but they're usually from the brain injury team when they're getting proactive... When I worked on the ward we had a long term ICU patient (16yr old girl suffered massive brain injury following routine, minimally invasive tumour removal, now trache and stuck in the hospital) make it to us on the ward with a somewhat structured daily timetable developed by ICU that incorporated wake up and morning hygiene routine, feeds and rest time. However when we came to the ward the brain injury OT got involved pretty quickly settling up a ward friendly timetable that included her weekly schedule (physio, OT, speech etc) and her daily timetable (rest, feeds, bath, trache changes etc). This was printed on a +++ large poster in bold print in her room and drilled into her mum so that every nurse caring for her could. not. miss it. I think it was helpful to mum, who needed guidance, and ward staff, in working their day around the patient's timetable (i.e. fitting their three other patients in around this patient's set routine).

[umcRN, BSN, RN]

Thanks for the replies. I guess this is not something just my hospital has trouble with. Our OT's certainly wouldn't set up an ICU patients schedule but they will try to see patients during certain times and help them stick to their schedule. I guess we just have to keep experimenting and trying. If a parent sets up a schedule for their kiddo then we're pretty good about sticking to it but when the parents are having trouble with it it's hard for us to implement something

[AnonRNC]

Do you have a Child Life Specialist? Social worker? Someone needs to establish a relationship with the family and let them know that it's okay to place limits on a sick child. Both the child and the nursing staff need the child to be on some type of schedule. A schedule would even allow the parents to take a break sometimes!

[tryingtohaveitall]

I was also going to suggest a child life therapist to assist with a schedule. We have a child who's been in the hospital for years. For better or for worse, the parents rarely come so our struggle is in encouraging the staff to be consistent.

[umcRN, BSN, RN]

We have a child life therapist but to be honest she's pretty useless. When we call her she basically just co es and drops off toys and leaves. She never spends much time with the kiddos, so frustrating.

[NotReady4PrimeTime, RN]

We have a child life therapist but to be honest she's pretty useless. When we call her she basically just co es and drops off toys and leaves. She never spends much time with the kiddos, so frustrating.

Are you sure we don't work together??

[umcRN, BSN, RN]

Are you sure we don't work together??

I wish since your program seems so much more advanced with your cardiacs! Haha but no I am down here in the USA still :)

Its unfortunate that this seems to be a common trend though. our picu child life therapists are beyond fantastic and whenever we get a kid from the picu they will continue to follow them but the "heart institute" has their own and like I said, useless

[NotReady4PrimeTime, RN]

Perhaps we are "advanced"; I wish we were also realistically selective.

Our child life program is divided up on party lines too. The CL therapist assigned to the non-cardiacs is better at interacting with the kids. The one with the cardiac team is more worried about appearances. (She definitely doesn't dress to play with children.) She makes an appearance on the unit and chats up the parent(s) - especially those who are frequent flyers, tosses a glance or two at the kid, might come back later with a toy or some books, hands them off to the nurse and disappears again. There are signs up in several prominent places in the unit that indicate that NO child life services (like sibling support, hand- or foot molds, etc) are to be offered to families until Child Life has agreed to provide them. Why bother at all then?

[umcRN, BSN, RN]

There are signs up in several prominent places in the unit that indicate that NO child life services (like sibling support, hand- or foot molds, etc) are to be offered to families until Child Life has agreed to provide them. Why bother at all then?

So sad :-(

[SprightlySparrow, BSN, RN]

That is so disheartening that your Child Life Specialist isn't doing what she should be doing. Both peds ICUs I've worked in have had amazing CLS and social workers. I was going to suggest your CLS coming up with a schedule (with the parents) and then having every care provider involved in the patient's daily care (MDs, RNs, RTs, OT/PT, etc.) STICK TO IT...but then I saw where you said yours isn't very helpful.

Our CLS usually meets with the patient or family and comes up with a daily schedule. It is then printed out and made all pretty with pictures, colors, etc. and posted all over the place in the patient's room. Sometimes it is still a struggle to get patients and families to adhere to this, but usually after a few days and some awesome, tough nurses making sure the schedule is mostly maintained, the schedule sticks. Unfortunately, this requires active participation from your CLS. I have found that the parents are usually quite receptive and helpful (especially if they are involved and part of the planning process), but I'm not sure I have any solid advice on your CLS situation...I'm so sorry!