Proper Planning – The Dress Rehearsal

One way to set yourself up for a successful clinic visit is to prepare for the actual appointment. All through my childhood, mom and dad taught me the 5Ps: Proper Planning Prevents Poor Performance. Remember our motto, Repetitio Mater Studiorum Est? Drill this into your brain. If you plan and prepare properly, you have a much better chance of having a much better time. So, you can either plan on your child losing his or her ever-loving mind, and then mentally gear yourself up for your own imminent breakdown. Or you can prepare your child for what they are about to experience and show them how to navigate the appointment successfully before you even get there.

In all honesty, it makes perfect sense to me why kids pitch a fit when going to see the doctor, especially if they have undergone a myriad of surgeries, had PICC lines, trees of IVs, and all kinds of needle pricks from lab draws and heel sticks. Shoot, I have white coat syndrome, and I have never had any kind of traumatic hospital experience (well, of my own, that is). It’s the darnedest thing. I can go to the doctor for a routine physical, knowing full and well that absolutely no harm or pain will befall me. And yet, without fail, the moment I sit on that cold, hard, pitiful excuse for a “bed” covered in that awful, obnoxious, crinkly paper, my heart starts to race and my blood pressure goes through the roof. There have been several visits where my doctor has had to retake my vitals three and four times because my blood pressure was that of a severely obese chain smoker being interrogated by the CIA. I just have to calm myself down and talk myself off the ledge, and then my vitals begin to reflect my actual health status. So it’s no wonder these kids act out when they see white coats, stethoscopes, and masks! If I were them, I’d all but flee the country! But if you prepare them and yourself for the visit, it doesn’t have to be that bad.

N just turned one, so we’re really just entering the toddler phase. He’s finally just about caught up from the developmental delays brought on by being in a hospital bed, unable to move, for eleven weeks. We’re on the cusp of walking, he’s babbling more and more deliberately with specific syllables, and he understands basic phrases and questions. The difficulty is that he’s not quite to the level of understanding what is happening to him in clinic. All he knows is that there are painful lab draws, scary machines with wires and stickers, and a hard, plastic, knobby probe that is covered in cold jelly and pokes him in the chest and tummy. So at this point in time, there really is no verbal preparation we can do, because he just doesn’t have the cognition for it; there’s no logic or reasoning with a one year old. So as it stands, all we can really do is comfort and distract him. However, as he grows and develops more cognition and can begin to understand what’s happening, we hope to be able to teach him that clinic doesn’t have to be this horrible, scary experience. I have this theory that if we make it a game at home, it’ll be a game at clinic.

We have a stethoscope at home so we can take his vitals nightly and log them for reference. Right now, to him it’s just another thing on which he can scratch his itchy gums (those one year molars sure are pesky!). But eventually it’ll be something he can become involved in. We can practice his counting by keeping track of his heart beat. We can show him what the doctors are listening for and how the stethoscope doesn’t hurt. We can use the stethoscope on ourselves and let him listen, all the while showing him how happy we are and how painless it is. Our stethoscope even has interchangeable animal faces for the end of it, so hopefully that’ll further encourage this idea that it’s not a bad thing. He can pick which animal he wants to listen to him that night, and that involvement will help him feel like he is maintaining control. Because that’s when the fear sets in, right? When we feel like we’re not in control, we panic. We want him to be able to feel like he’s in control of his situation, and keeping things predictable and routine will assist in that. Laura’s mom had the same general idea:

When I was little and was afraid of going to the doctor, my mom would listen to my heart at home to show me that it wouldn’t hurt. Just that the doctor wanted to listen to me.

Laura Hofheins, 27 years post heart transplant

As for quelling fears of the EKG and Echo machines, I’m attacking that from two different angles. The first method is through Super N. As he starts to understand stories and plot lines, the goal is that he’ll hear his story and see that even though the machines look big and scary, they are friendly and won’t hurt him. They are there to help the doctors make sure his heart stays strong so he can keep being Super N.

Method number two is to take those ideas from the book and turn them into actual games. I want to, in essence, practice clinic at home so that it becomes familiar and not this dreaded day at the doctor filled with tons of unknowns. Eventually, our clinic visits will be more and more spaced out, and he may not remember all that is involved in these visits. That’s when the machines, beeps, and squeaks become foreign and uncomfortable. By playing doctor and clinic at home, we can keep a positive spin on what he will experience when he goes to see his transplant team. It’s like a dress rehearsal before the big show.

When he is old enough to start playing this game, I’m going to either find or manufacture something that simulates the Echo probe and bust out the aloe vera gel, rub the jelly on his tummy, and turn it into a game, like “find your heart.” It wouldn’t be too difficult to “plug” the probe into the iPad (and by that I mean drape a fake wire behind it so he thinks it’s plugged in) and play a video of a cartoon heart beating. That way, he can feel the gel, get used to it feeling sticky and gooey, and he can see that the probe doesn’t hurt. He can play Echo tech and look around his chest. I’m sure it’ll even devolve into him looking at us or the dog, so that’ll get interesting. But the bottom line is, it’ll be something he’s accustomed to versus something that is weird and different and that he doesn’t see very often. I really think this will dampen the crying and calm the fears.

As for the EKG, that’s just stickers and wires. Kids love stickers, so I’m hopeful that’ll be an easy kill when it comes to comforting him and teaching him about that piece. Also, a fun little trick we’ve learned is that lotion is key when it comes to getting those stickers off. We put lotion on N every night anyway, but on clinic days we put extra lotion on the night before, and we put an additional coating on his chest, shoulders, and thighs the morning of the appointment. This really helps the stickers peel off more easily, which means less trauma and fewer tears. And that makes for a happy baby and a happy Momma.

So that leaves the crumbiest part for last: the dreaded lab draw (cue dramatic music). Because of the number of lab draws we’ve already been through, he has a serious and very negative Pavlovian response to alcohol wipes. He immediately knows what’s next, and oftentimes the screaming starts before the techs can even get the tourniquet on. Sometimes he calms down after the needle is inserted and the initial pain is gone, but sometimes he thrashes about like a crocodile mid-death roll. And let me tell you, he’s wicked strong for such a little peanut. So how do I make this less painful and distressing?

There was a study I recently saw that said that if you cough while getting a shot, the impulse sent from the brain that tells your body to cough on command will actually block out the pain receptor signal being sent to the brain that tells you that the shot hurts. Essentially, the brain can’t process both signals simultaneously, so it processes the cough first and blocks out the pain from the needle. We’ve been practicing this adorable little fake cough with N and encouraging him to mimic us. Once we can get him to cough consistently on command, we’re going to start putting this theory to the test. Fingers crossed it works! You can find articles on this trick here, here, and here.

We go to clinic every three months. When we arrive, we go straight to get labs drawn then chest x-ray. After that we meet with the pharmacist to review meds. Next, we meet with our transplant coordinator. Davis has an echo each time, and then we see one of the doctors. We usually meet with nutrition as well.

I don’t really have any tricks yet. We are still pretty new at this, but we do draw up meds the night before. It’s easier to have them already prepared then trying to draw them up and give them between people coming in and out.

-Amanda and Tucker Boswell, son Davis 15 months post heart transplant

About kharris

Kate Harris is an aerospace engineer for the United States Air Force. She is also a wife, mother, baker, quilter, and, now, a blogger!