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!