I’m going to say early on that this is merely an opinion post. On Sunday we got to celebrate Nolan’s graduation from the CHAMP Program and it was really exciting. They developed a really nice way to improve care during the insterstage (the period between the Norwood Procedure and the Glenn Procedure). I have read a lot online lately, though, that pediactric cardiology teams are working to continually improve the insterstage, and that’s a GREAT thing. So having been through this period already, I got to thinking about how we can make the interstage better. The best idea I’ve come up with, thus far, is one that is gleaned from my work experience.
As I’ve mentioned in a blog post or two, I currently work at a hospice. What makes hospice different from some other kind of care is that it’s considered an “interdisciplinary program”. What the heck does that mean? Well it basically means that hospice approaches care for both patient AND family/caregiver with a team effort. Hospice patients and families have access to doctors, nurses, CNAs, social workers, chaplains, volunteers, and bereavement counselors. That’s pretty dope, right? I agree. So here’s what I’m thinking: heart centers should REALLY look into utilizing an interdisciplinary approach for their interstage families. Let’s take a look:
- Physicians: this one is obvious. During the interstage there will be frequent appointments with your child’s cardiologist, probably once a week. This is crucial to insure heart function remains very good. I think it’s safe to say this one won’t change a bit, and I’m ok with that.
- Nurses: a lot of programs differ when it comes to at-home nursing. We actually had a nurse come out to the home a few times, but she was more concerned with making sure we knew how to properly weigh Nolan, draw his meds, take his sat reading, and give his meds and feeds. Nothing too earth-shattering. After a few visits she stopped coming because she felt we had it under control. Unfortunately to me, that’s not enough. Questions come up all the time and I think we could have really utilized a nurse on a more regular basis…if anything just to give us peace of mind. I think this is the really important link for an interdisciplinary program: if nurses can’t make regular visits, then I think they should make regular calls. Don’t put the ball in the family’s court to always be the one to initiate contact…I think it should be a two-way street.
- CNAs: this one is a little tricky because I don’t know where a CNA would fit into a heart program. In the hospice world they assist with bathing, feeding, etc. I’m thinking that a CNA could be someone to come and keep an eye on the baby to provide some respite care for the parent(s). I know that at times my wife was home with 3 kids at a time. While she’s a trooper, she could’ve definitely used a break.
- Social work: this is where I think an interdisciplinary program would provide the biggest benefit during the interstage. No, the social worker isn’t someone who is just making sure your child is fed and clothed (though they will be checking for that too). The social worker’s job is to help you as parents through any kind of psychosocial issues associated with your child’s care: the stress, the frustration, the anger, the hurt, the sadness. Imagine having someone to talk with about it, even if it’s just once a month by phone. I really think MANY strides can be made in this area. Heck, social workers can even help families with other issues such as navigating the world of SSI benefits, how to get help with bills, where to find help if you can’t buy groceries, etc. It’s a MAJOR win.
- Chaplain: chaplains are awesome because they’ll work with you no matter your belief system. There are a lot of difficulties, spiritual or not, associated with caring for a child with a severe illness. It’s taxing and will deplete you physically, emotionally, and even spiritually. Chaplains can assist with “unpacking” all those feelings and offering you support through your journey.
- Volunteers: I’ve written a lot about the Cuddle Crew at Levine Children’s Hospital and how they were an absolute LIFESAVER. They took care of Nolan in the hospital whenever we couldn’t be there. I think the same concept in-home would be awesome and would provide the same respite services, technically, as a CNA would. Imagine having someone come once a week or every other week to hold you baby while you took a shower or even took a well-earned breather? Awesomeness.
Sounds pretty good, right? I know it does to me. What will it take to incorporate something like this into a heart program? Probably a ton: personnel, funding, etc. It’s a lot of work. But this is all about ideas, right? It’s my hope that one day something like this could be a reality so heart families can enjoy the same excellent support at home that they received in the hospital. And I’m willing to bet we would see a lot more success for babies during the interstage as well.
So what are your ideas about improving the interstage?
While having a heart baby is much different than having a healthy baby, a lot of things remain the same. The biggest is that you need to develop some sort of routine. We got pretty good at ours: meds in the morning, meds at mid-day, meds at night; filling the feed bag, mixing formula; appointments. The only thing we didn’t have down to a science was sleeping. By this stage, Grant was sleeping well, but Nolan was doing a terrible job of sleeping, and we just couldn’t have the twins in the same room because Nolan would wake up Grant and it would be horrible. The worst part is that I made it my job to take care of Nolan when he would fuss during the night, especially since my wife was home all day with multiple kids: it was the least I can do. That would leave me as a total zombie for work because I would only get a few hours of sporadic sleep. Sometimes I couldn’t stay up no matter how hard I tried: I remember one night where Nolan was fussing and I had gotten practically no sleep over 3 or 4 straight nights. I got out of bed, bent over him, and then just froze. It was like brain shut my body off and was like “Hey idiot…you need sleep!” I remember standing up and stumbling back to bed and telling my wife, “I am so sorry babe, I just can’t do this tonight.” Then I just crashed in the bed and didn’t hear a THING until the morning. How did we do it all? No idea…Grace of God.
Another important part of the routine is cleanliness. It is imperative that you try your best to keep the germs off your heart baby because they are so susceptible to illness…and even a cold can put your little one back in the hospital…it’s serious business. So how did we do this? Well for one we limited how often we went out with Nolan. For a long time we just went to the doctor and that’s it. If people came to visit, we insisted they used hand sanitizer before interacting with him. If they were sick, we politely asked them to stay home. And if people wanted to interact with Nolan, they needed to keep off his face. A few other important thing to remember is your work and school clothes. Everyone knows that daycares are breeding grounds for germs, so whenever our oldest came home from preschool, we made sure the first thing he did was change into clean clothes. Since I work in a healthcare environment, I could also potentially carry some nasties on my clothes, so I would also change when I got home from work.
Like I’ve said before: this was our new normal…and it will be yours too. You won’t have tons of parties, go on lots of baby vacations or have fun trips to the park. Early on you need to develop a good routine and learn everything you need to learn in order to make sure your child has the best chance to survive and thrive!