What should families expect during their child’s hospitalization?
Once patients finish their cardiac surgery and they recover in the ICU, there is a team of nurse practitioners that care for the cardiac surgical patients. They round for the patients when they are ready to come down to the step unit and floor. We then take over their care and work with the nurses, attendings and multidisciplinary team to send them home from 8 East, so we see them through their stay.
Every cardiac surgical patient has a surgical attending as well as a cardiology attending. We work with both of them directly, with the family and with the nurses. When surgeons are in the operating room, the nurse practitioner (NP) is available to patients and family members. Although, we round with both attendings as the day progresses when they are free. We round with the family and nurses and for the most part, have lots of back up but make pretty independent choices and are the first point of contact for emergencies. We have accessibility to a lot of people when needed, but serve a pretty autonomous role on the floor.
– Amy Delaney, RN, MSN, CPNP, nurse practitioner, 8 East
I work a lot with the family when they are in the hospital. It can be hard to have a child in the hospital and difficult to positively engage with their child who they may never have even held yet. It’s scary and they’re so sick, but we work together to provide the best avenue for parenting in the ICU. Also, we know what a lot of these children look like when they first go home. So it can be helpful to talk about normal infant reactions to transitioning home and share anticipatory guidance, which may relieve some of the stress of transitioning home. We try to prepare them for what the child might look like after surgery and what it’s like to transition from the ICU to the step-down unit. We try to talk about different transitions before they happen, and answer some of the questions parents may not even know they’re going to have.
– Samantha Butler, PhD, developmental psychologist
Routines are really important, especially for sleep patterns. We work on trying to find ways to turn down the lights, close the door and close the curtain. We try to establish some sort of routine so patients know what to expect. Most things in the ICU will happen in their bed because they can’t get up. We may try to carve out a time for the family to be a family.
– Kate Huyler, MS, CCLS, child life specialist, 8 South
We try to foster a sense of decisional control for patients and families, regardless of age. For parents, we tell them to offer choices to their children whenever they can, but also don’t offer a choice when there’s not a choice. That’s an important part of staying in the hospital. Like, having a blood draw may not be a choice, but whether the child sits in mom’s lap or dad’s lap may be a choice they can make.
We oversee a number of different programs on the unit. The Creative Arts program is in all of the units. We have artists in residence who can come and do a special painting project, we have a videographer and we can maker referrals to these programs when a patient is in the hospital. Music therapy also works closely with us. We oversee pet therapy on the unit as well. A lot of our job is making sure families have the resources they need to help their child cope. We advocate for the treatment room to be a place where that stuff takes place, and for the bed to be a safe place. Similarly, we advocate for the playroom and hallways to be a safe space and encourage that with families. We can provide behavioral distraction and developmentally-appropriate information before the procedure or even while the procedure is happening. We also think about the language we use with children. Procedural support is a huge thing we do on 8 East.
– Lauren Smizer, BS, CCLS, child life specialist, 8 East
It’s also important to acknowledge with parents that this is hard. It’s a lot of information, it’s the waiting that’s a hard part. The procedures are easy; we tell the kids they won’t even remember them, but waiting is hard. I give tours of 8 East, 8 South and 6 East so that they know what it looks like before they come.
– Maureen Abramson, MS, CCLS, child life specialist on 6 East, Cardiology pre-op, and Cardiology general clinic
What support is there for siblings in the hospital?
Giving siblings little jobs to do can be really helpful, like picking out a blanket or an outfit for their sibling in the hospital. Oftentimes parents tell me that they don’t want the sibling to come in at all because it’s too scary. But I’m a big advocate of having siblings come in. Obviously I defer to what the parents decide, but if they’re on the fence, I will talk with them about why. Sometimes it’s their fear, and a lot of times they bring their other child in and they realize it’s not as scary as they thought. A lot of kids have that magical thinking, and may think it’s a lot worse than it actually is. So bringing them in or just showing them pictures can be helpful.
Sometimes we send a sibling care package to the child that’s at home, I think that makes them feel a little more special. And I’ve had parents tell me that it’s taken such a load off their shoulders to know that there are other people thinking about their children because obviously it’s their priority to be with their child that’s in the hospital, but they feel such a guilt. We talk to parents about this all the time – the guilt that comes from leaving other children at home. It’s hard for them, and they’ve said it’s really helpful knowing that Child Life is here.
– Kate Huyler, MS, CCLS, child life specialist, 8 South
What should families expect when it’s time to leave the hospital?
We plant small seeds along the way of recovery. Even if it is something that in our minds is relatively straightforward, cardiac surgery is still cardiac surgery. Sometimes it’s hard for families because they come in with seemingly healthy kids who need surgery, and then they are leaving the hospital within three days of time and we are really telling families and preparing them to say this is fixed. We say, “Your child is going to have a great life and a healthy life.’ Families will tend to want to say, “Should our child not go to school for six weeks? Should we just keep them at home? Can we go food shopping?” Those are very good questions.
We also have those patients who maybe have a prenatal diagnosis; it’s a brand new baby and mom is post-partum and recovering herself. Their baby may be in the hospital for a long time. They may be very complex, seen by multiple specialists. Watching these families enroll in new healthcare insurance, on the phone for 8 hours, on hold. It takes a whole team of people to take care of these families. Then you have the babies that are diagnosed postnatally. I think a lot goes into it; that would not be possible without having solid case management, nutrition and a dietitian clinically related to specialty care.
There is a lot of coordinating and there are a lot of things that go into getting somebody out of the hospital, both physically and emotionally. We know we need to start these plans and start mentally preparing patients to leave the hospital almost immediately. We try to give families really concrete examples as to what they are able to do and I think they appreciate it. They all feel a little bit liberated from it.
– Amy Delaney, RN, MSN, CPNP, nurse practitioner, 8 East