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