Making the Interstage Better

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:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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?

About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love coffee and Yankees baseball. Be kind to one another.

Posted on February 11, 2014, in awareness, Care at Home and tagged , , , , , , , . Bookmark the permalink. Leave a comment.

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