Monthly Archives: November 2013

A Model of Faith, Strength and Family

Caleb, his parents and members of the care team the day before Caleb left the hospitalShelly Roth grew up in Belleville, IL, and when she was in high school, a respiratory therapist (RT) came and spoke to her class.  With that as her inspiration, she went on to earn her degree in applied science at Southwestern Illinois College. A friend suggested she apply for a job at St. Louis Children’s Hospital about 8 years ago, and she’s been working here ever since.  As we approach Thanksgiving, she tells From the Bedside about one patient and family she’s especially grateful for this year.

People will often ask where respiratory therapists (RTs) work in the hospital, and I tell them everywhere.  I get to work in any department where a child needs lung or airway support, but I also have a “core.”  I work in the Cardiac Intensive Care Unit (CICU) most of the time.  The core makes it easier for families, because parents are seeing familiar faces.  And that’s how I met the Millers.

Caleb was here almost immediately after he was born, but for a very short stay.  A few months later, when his family came back, he was extremely sick.  That time, their bedroom was right in front of our desk.  We’d be done with our therapy, and we’d sit at our desk and be talking, then look forward and see this poor sick child, and his family just in turmoil over the fact that they may never have another day with him.

Respiratory therapist Shelly Roth holding CalebAt his sickest, Caleb was at death’s door.  But even when it was darkest, his parents held on to every little bit of hope they could find.  They had such incredible faith, and they put so much faith in those of us taking care of him.  He had procedure after procedure and had to be put on ECMO before he got his new heart, and we saw them through all of that.  The ventilator supported him through the entire course.  So we were in there at least three and four times a day as RTs, but then we’d just start checking on them, asking if they needed anything.  We started this thing where I’d go in there each day with a Laffy Taffy joke.  It was something silly and quirky, but it was something that would get a giggle out when things were really tough.  Over the last eight years I’ve learned how important that is.  These families need a moment like that each day.  They need a refresher, and they need to be able to look back and know they were able to smile, even briefly, along the way.  They can release a little harsh energy then go back to the bedside and take care of their child.

They never left Caleb’s side, whether one was sleeping in a cot in the back of Bed 5 or on a cot in the other room.  They were always there, and said from the beginning, “You guys are here to take care of him.  We’re here to be his parents.”  That meant a lot, because there are a lot of kids in here who don’t have that opportunity.  The parents can’t be here 24/7.  And Caleb’s parents had their struggles – Matt had to go back to work, they had two boys at home who were small and didn’t understand why both parents weren’t there.  To see that, it’s just amazing that they were able to juggle all of their life and still be here, and still be able to give you a smile and tell a joke and have fun with you.  And those Laffy Taffy jokes would turn into conversations.

Caleb’s recovery was long and it was slow, but it was amazing to watch.  We went from going to their room to comfort the family to going to their room for sanity.  When we were having a tough day, we would go to Caleb’s room because Desiré would have something funny to show us, or Caleb was smiling or giggling.  So from start to finish, it was always the place to go, whether it was helping him, or, in the end, them helping us.  I don’t know how many times I went and cried to Desiré that I couldn’t find a wedding dress.  How small is that?  Compared to what they have going on?  But they became that much like family.   It was a tag team on their family and on us, helping each other out through all of his tough times in the ICU.

Caleb and his parents the day before he went homeI will be getting married in May, and I look at the Millers as a model.  They were, at the darkest point, very sad, and they made the best of it.  I learned from them the value of being happy and loving your family no matter what, and to be together and appreciate the people around you, and to grasp it and run with it.  I know if I were to ever have heartbreaking news given to me, I can always look back and say, “What did Desiré and Matt do?”  I can look at those situations and know they got through it, I probably can, too.  They’re inspiring.

It was hard, the day they left.  It still is hard.  It can get crazy around here, and I have still walked in to Bed 13, and sighed, “Oh, he left…”  I keep in contact with them.  They let us know his progress, so we get to briefly speak with them, but it’s not the same.  I’m very happy they got to leave, but very sad that they’re not here.

It’s crazy, because when I first started I was so scared of children.  It wasn’t because of them – it was just scary.  They’re so little, how do you treat them?  With an adult, they can tell you how they feel, they can tell you what to do.  But with kids, it’s great, because you start from the beginning.  You start when they’re little, and you get to play with them and treat them, and you get to watch them grow up.  In two years when Caleb comes back here and is walking – we did that.  We got to see him from minute one, and we got to see him grow up.  You see them at their worst, then you see them walk down the hallway or running to you giving you a hug, or sending you a valentine, or the family is coming in giving you pizza because they care.

It’s different.  I like it.  It’s fulfilling.  It makes a hard day better.  That’s why I like working with children.

In two years, I expect to see Caleb running down the hall.  Even with his little ventilator now, I can see it, and it’s great.  It’s amazing looking forward and thinking that I will walk out of this room one day, and see him running down this hallway.  I cannot wait.

Caleb and his family thanked their care team with a cookie cake and celebration the day before they left the hospital

Diabetes Educator Learns from Her Patient

LaurenLauren Anderson received her undergraduate degree in Nutritional and Medical Dietetics in 2008, then returned to school in May 2009 for an accelerated Bachelors of Science, Nursing (BSN) program.  She received her nursing degree from University of Missouri – St. Louis in 2010, and began working at St. Louis Children’s Hospital as a nurse and part-time educator two months later.  She knew she wanted to be a diabetes educator from her time as an undergrad, and became a full-time educator at Children’s in October 2013.  She tells From the Bedside about Braden, a newly diagnosed 10-year-old she met several months ago, who continues to inspire her today.

I met Braden and his family a couple years after I started at Children’s. They were admitted on a Monday, late at night.  They all of a sudden got this call from their doctor’s office saying, “You have to go to the hospital immediately.”

It’s a very time-sensitive diagnosis.  They’re from Springfield, Missouri, so they packed all their things and rushed to the hospital. Then we found out first thing Tuesday morning that we weren’t covered by their insurance.  But we said, “You’re here, we’re going to teach you, we’re going to do everything we can to get you educated.”  They wouldn’t be able to follow-up here in the future, but we could at least get them situated with appointments at another hospital.

The financial aspect can be kind of overwhelming in and of itself, and this family was definitely overwhelmed. Mom was tearful, dad was nervous, but Braden, who this was all affecting, just pulled his whole family together and said, “You know guys, we’ll get through this.  It’ll be okay.”

He was inspiring to me, because we are usually holding the hand of the little child, and he was doing that for his parents, myself, and even the doctors – getting everyone on the same team and getting things going.  Throughout his whole stay, he was just an inspiration the way he took everything in stride.

Families are here for 48 hours, and as educators we spend about four hours with them one day and six the other.  We go from total strangers to knowing everything about them – their routines, their meals, their insurance, their employer.  We have a bunch of classes one-on-one with them if we’re able, where we very carefully try to ease them into the disease, teach them how to test their blood sugar and, eventually, give themselves insulin injections.

Thumbs UpWith Braden, though, in the first ten minutes of our class, he had already tested his blood sugar, said it wasn’t a big deal, and asked, “What’s next?”

He gave me a saline injection in my arm, then asked if he could give one to himself.  Most kids wait a day to get used to the idea, but Braden said, “Let’s just do it.  Let’s get it over with.”

He automatically went for the leg, which kids are usually scared to do.  He did it, looked at his mom, and said, “It’s no big deal.  Can I play the drums on Saturday?”

He was the ring leader of the family, which was kind of cool.  Sometimes the kids are kicking, screaming, on the floor, having tantrums – reasonably so.  They’re going to have to get four to five shots a day for the rest of their life.  I wouldn’t be cool with that.  I’d be having a fit.  But Braden, he just wanted to be able to do the things he did before.

I’d never seen anyone quite like him.  His spunk – he was also brilliant.  He is a really smart kid, and he picked up the carb counting math, which can really make or break the way a kid fares. For being ten-years-old, he was so together, and talented in so many ways.

In 1991, we had 62 diabetes patients in a year.  This year we’ll have 162.  It’s a more prevalent disease now.  We don’t know all the reasons why, but we do know you can manage it better now.  If you compare that to the early 80s – diabetes was almost an early death sentence.  We didn’t have the technology, so you were expected to be in the hospital more frequently, probably lose your vision, have kidney failure, maybe lose limbs with amputation.  Now, while insulin doesn’t cure diabetes, it makes it so patients will survive.  The life expectancy now is almost the same as any other person, which is amazing.  So in the last 100 years, we’ve come a long way.

I started as a nurse at Children’s three years ago.  I got my foot in the door, then became a full-time diabetes educator just a few weeks ago.  This is my dream job, but I hope I’m around long enough to be put out of business.  I hope we’re that close to a cure for diabetes.  Until then, though, I’ll take Braden’s example with me to each patient session I have.  He taught me to expect the unexpected with kids.  Don’t expect it to be a challenge, because kids tend to surprise you.  He was the perfect example of what we tell families: diabetes does not have to rule your life or ruin your life, you can work diabetes into your life.  I think he’ll blow everyone away by what he’s able to do.  Braden was diagnosed on Monday, and the next weekend, he was playing the drums again.  If patients can have a good, positive attitude in the beginning and start mastering the skills we want them to, then that gives them the power to master the disease and manage the disease.

picstitch

Within a week of his diagnosis, Braden was back on the baseball diamond and playing drums with his band.

Subscribe to this blog