To start off, let's state the obvious: this blog has been silent for a long, long time. If you're looking for updates on Ethan, we keep his Facebook page, Hope For Ethan, updated on a consistent basis and you can follow along there whether you have a Facebook account or not.
I'm brushing off the dust here to formally write out something that I've been asked about a lot recently: Ethan's coping scripts. Because his life is always going to include more than its fair share of medical procedures and hospital stays and ER visits and and and, we've been incredibly intentional with him to provide him with ways to work through his fears and emotions while he faces things that toddlers shouldn't have to deal with. Much of this has been gleaned from watching other heterotaxy families work with their children, and we've tweaked things to work for Ethan, so if you're a medical mama (or papa!) reading this, you'll need to tailor these suggestions to your child. But because we've come so far in helping Ethan cope, we want to share what we know in hopes that it will help other families out there as well.
My caveat with all of this would be to not expect it to work right away or necessarily at all since as we all know every kid is different. Depending on what you're facing, much of this might be irrelevant, so I've tried to break it down into sections that will hopefully make it easier to find what you need. These are techniques that we've been using with Ethan for every single procedure since he turned a year old, so it took a year and a half to really truly come to fruition, but it's never a bad idea to use these techniques, because I truly believe that caring for our kids' emotional needs is critical when it comes to helping them navigate medical issues.
The biggest thing we do is ensure that, as much as possible, there are no surprises. This seems so simple, but it's so important to keep our kids' trust, especially if they're going to be facing ongoing issues. We use real words, other than the ones that he picks for himself ('picky' instead of 'needle' for example) and try to show him equipment beforehand if possible. It's actually really funny now when nurses who don't know him come in with a blood pressure cuff and start talking about an arm hug and the 2 year old is like, That's a blood pressure, not a hug.
PREPARING FOR IV STARTS, BLOOD DRAWS OR OTHER MINOR BUT PAINFUL PROCEDURES
I am 100% against the idea of tricking a kid and then sneak attacking them with needles or catheters or what have you; all it does is scare them more down the road and breaks their trust in you. For Ethan, before every procedure, we go over 'the order.' We started when he was tiny with just single word prompts, and as he's gotten older we've been able to expand that as his vocabulary expands. So, for example for a vaccination when he was a year old, we started with picky (his word for a needle), band-aid, boobums (his word for nursing). We now use a script that's more complete, but it still has key words and phrases that he can latch on to and repeat back to us. Him knowing the order helps him feel more in control over what's going on, and while it's happening we can talk about where we are and what's next. As he's gotten older, I go over the order and then ask him if he wants to repeat it back to me to make sure he knows what the plan is. We talk through each step and discuss whether each one will hurt or not, and if something's going to hurt we talk about whether it will hurt a lot or a little and for a long time or a short time. We are very up front about this, again because we feel it's so important for him to know that he can always trust us to be honest with him.
Another huge thing for us is giving him an option to respond physically to painful procedures in a way that doesn't impede whatever it is they're doing. When he was smaller, we would encourage him to kick his feet and scream, and that gave him something physical to focus on doing that wasn't pulling his arm away. We always make sure to explain to whoever's doing the procedure how it is that he copes so they don't interfere. So, for example, if he was in a foot-kicking phase, we would make sure no one held his legs down, and if he's in a screaming phase, we tell them that he's going to scream and to not try and shush him. It's always been really important for him to have a way to have that physical reaction. As he's gotten a bit older, we give him choices of how he could react (depending on what they're doing) and he decides what he wants to do. He's also gotten to the point where we can instruct him through the procedure to change methods if he needs to, so, for example, if he's kicking too hard and it's shaking the whole scene, we can get him to suspend the kicking for a little while. (That's advanced level stuff though.)
Here's an example of what it sounds like for an IV start:
Me: Okay, Buddy, we have to go get a new IV. [Stop and allow time for him to freak out. Don't tell him not to be scared or that it's okay or that it won't hurt. We always try to validate his feelings as much as possible, and correct people in front of him if they say things like 'Big boys don't cry.' They definitely do, and this all sucks so let's not pretend it doesn't. Okay. Off that soap box.] I know this is scary for you and I know you don't want to do it. I'm so sorry. Do you want to do the order? Okay, the order is: rubber band, cleaning, picky, tape, all done. The part when they put the picky in will hurt a little bit like a pinching but the other parts don't hurt. What do you want to do? Kick your feet or scream?
Ethan: I want to kick my feet and I will scream.
Me: Okay, and what will you do with your hand?
Ethan: I will keep it verrrrrrry still.
Me: Do you want to do the order?
Ethan: Yeah. Rubber band, cleaning, picky, tape, all done. Will I see my blood?
Me: [Realizes I forgot to ask if they're doing labs. Find out they are] Actually, yes, after the picky part they will get some blood. And then taping. So we have to change the order. Remember, we always make our plan but sometimes the plan has to change. [This is an idea we review a lot, that we can try to anticipate but sometimes things change.] So the order will be: rubber band, cleaning, blood in the tube, tape, all done. Do you want to watch your blood go in the tube?
Ethan: Yeah, I want to see it.
Me: Okay, so which part will be the hurting part?
Ethan: Just the picky.
Me: Will it hurt a long time or a little time?
Ethan: A little time.
Me: Will it hurt a big bit or a small bit?
Ethan: A small bit.
Me: And I will tell you the order while we do it, okay?
And then we go. If he's still really resistant we choose a reward for after and talk about that, like a show to watch or a lollipop if he's allowed. So there's a lot of repetition beforehand and during, emphasizing the order of things, what will hurt and what won't, and giving time to ask questions about the different parts if he wants to. I don't prepare him until right beforehand to minimize freakouts; it takes a while to go through everything, and I've caught a few people rolling their eyes, but then they see how well he does and how still he holds and they don't roll them the next time.
PREPARING FOR SURGERY / PROCEDURES UNDER ANESTHESIA
For procedures under anesthesia we do a similar prep, but we start a little earlier to allow time for questions (since anesthesia / surgical teams don't really have time to stand around for long Q&A's while they're waiting to go into the OR). This would obviously depend on the age of the child. When it comes to surgery, he's thus far been small enough that we haven't prepped him until the morning of, but with an older kid I'd talk them through it earlier. We talk in general terms about what they'll do, answer any specific questions, and then talk about what he'll see or feel when he wakes up. And then we do an 'order' prep for whatever will happen as he goes under anesthesia. Sometimes that's us holding him to be gassed down, an IM shot of ketamine before he falls asleep and is taken back, or an oral cocktail of medications, but we do an order for that and review before they do it.
Here's an example of what I might say during surgery/anesthesia prep:
Buddy, tomorrow you are having an operation for your heart. [Take time to validate the inevitable meltdown.] You will have special medicine when they do it so you will not know what happens and nothing will hurt. [We try not to say 'you'll go to sleep' because he has so many sleeping issues to begin with that we don't want to compound it with a negative association.] First we'll go to the hospital and the doctors will give you hospital jammies. They'll put stickers on your chest so they can watch your heart beat, and then they're going to give you medicine that will make you feel tired. I will stay with you until it's time to go for your operation. When you're finished you'll have a new scar and a new bandage there, and you'll have IVs in your hands and one in your neck. You might have a tube in our throat to help you breathe. We will be with you; you won't be alone and we will make sure they give you medicine to help you not be scared and for it not to hurt. Are you scared? It's okay to be scared. Even if you're scared you're still brave. Being brave means doing things even when you're scared. We are always very careful not to tell him to try not to be scared and are intentional to correct anyone who says that to him. Telling a child not to have normal, healthy emotions is never really going to work, so we use our time to try to provide him with concrete strategies that he can use to handle those emotions rather than unsuccessfully trying to control them and winding up feeling even worse about the whole thing.
If it's a big surgery and he comes out of the OR with a breathing tube, we continue to talk him through anything that's happening to him, even when he's asleep. This is a habit left over from my time as a PICU nurse, but I figure it's best to err on the side of caution even when we think he's sedated and not hearing us, just on the off chance that he can. While they wean sedation and he's waking up still intubated it's a lot of just quietly reinforcing what's going on, what the people in the room are doing, and what the next steps will be. We try as much as possible to be his voice while he's intubated and try to give him opportunities to nod or shake his head to let us know how he's feeling using yes or no questions. This is all very specific to the kid; some wake up raring to go and that tube is out in a couple of hours, but Ethan is a slow swim to the surface every time, so we typically have a day or two with him groggy but aware and still intubated, so working through ways to cope with the harder parts of having a breathing tube (kicking his feet while they suction, for example) is certainly appropriate there.
WAYS TO HELP WITH COPING DURING HOSPITAL STAYS
A huge part of Ethan (or any child) coping in the hospital is giving choices wherever possible. We always ask which toe he wants his pulse ox probe on, which armpit for a temperature, which arm for a blood pressure, and we respect those choices. If he has multiple meds, we let him choose the order, and where possible we accommodate him if he tries to refuse. So if he says no meds we say, You have to take your meds but you can choose if you want them now or in five minutes. Which do you choose? Sometimes we get lucky and that helps because it makes him feel like he's regained a bit of the control. I literally ask for his input on every single thing that I can do that he feels like he's running the show, from the position of his pillow to the arrangement of his stuffed animals to what he wears.
We also try to bring key comfort items from home, so he has his own pillowcase and blanket, his stuffed animals and his own water cup, his white noise machine, and his own clothes wherever possible. It just helps with feeling a little more normal, and it's all way more comfortable than hospital-issue stuff. We find that stretchy, short-sleeved t-shirts a size up and soft cotton PJ pants with slippers are a great combo for getting over IVs. Another thing I've seen is taking a t-shirt a size or two up, cutting it straight down the middle of the back, and then putting in a couple Velcro squares to hold it together. It makes a make shift hospital 'gown' that's super soft and cute depending on the design.
While we're in the hospital, (and actually before any doctor appointment) we review the plan frequently; it's slightly different from the order that we talk through before a procedure, but it's also really helpful for him, mostly at bedtime. I find it helps him relax if we talk together to the night nurse before bed about the plan for the night. For example: You're going to go to sleep and the nurse will come in two times to do a blood pressure and a temperature. We will wake you up one more time to do your breathing meds and pats [chest physio when he's having respiratory issues]. That way when things are happening in the night, I can remind him of the plan and where we are in it. No surprises over here. And then we always remind him that the plan sometimes changes and give him time to express his hatred for that when it happens. Okay Buddy, that's the plan for the night, but we know that plans can change. I will let you know if it changes. Then, if the plan changes, we use that same language again. Ethan, remember how we said the plan was for no pickies tonight? Well, you have a fever so the plan changed. Now we have to do a picky so we can check your blood. I'm so sorry that the plan changed. That's hard when that happens, isn't it? I can't stress enough how important it's been for us to be really intentional about allowing him to express his anger or fear or any other negative emotion as much as we can.
FINAL THOUGHTS
I know that some of these scripts may seem pedantic, but we've found that using the same specific words and phrases over and over has been extraordinarily helpful in letting him regain a sense of control when he's facing the hard things. He knows that I will always be honest with him, so when I tell him that something won't hurt, a chest x-ray for example, he trusts me and no longer fights me when I tell him that he needs one. When emotions are out of control, the familiarity of the scripts that we use with him is something familiarhe can hold on to.
I mentioned above that one of the things we always say is that being brave doesn't mean that you're not scared. And that goes for both kids and caretakers. When all else fails, stepping away and letting someone else take over while you sob in the shower is 100% appropriate. Because sometimes it's too much, no matter how much you try to make it better.
I hope you've found at least some of this helpful, dear internet strangers walking hard roads. I'd love to hear what other families have done that's worked well for their children; please let me know in the comments, and I'll add to this post as appropriate. I'd love for this to be a great shared resource for us as we fight alongside our children.
Peace and love to you on your journeys.
I'm brushing off the dust here to formally write out something that I've been asked about a lot recently: Ethan's coping scripts. Because his life is always going to include more than its fair share of medical procedures and hospital stays and ER visits and and and, we've been incredibly intentional with him to provide him with ways to work through his fears and emotions while he faces things that toddlers shouldn't have to deal with. Much of this has been gleaned from watching other heterotaxy families work with their children, and we've tweaked things to work for Ethan, so if you're a medical mama (or papa!) reading this, you'll need to tailor these suggestions to your child. But because we've come so far in helping Ethan cope, we want to share what we know in hopes that it will help other families out there as well.
My caveat with all of this would be to not expect it to work right away or necessarily at all since as we all know every kid is different. Depending on what you're facing, much of this might be irrelevant, so I've tried to break it down into sections that will hopefully make it easier to find what you need. These are techniques that we've been using with Ethan for every single procedure since he turned a year old, so it took a year and a half to really truly come to fruition, but it's never a bad idea to use these techniques, because I truly believe that caring for our kids' emotional needs is critical when it comes to helping them navigate medical issues.
The biggest thing we do is ensure that, as much as possible, there are no surprises. This seems so simple, but it's so important to keep our kids' trust, especially if they're going to be facing ongoing issues. We use real words, other than the ones that he picks for himself ('picky' instead of 'needle' for example) and try to show him equipment beforehand if possible. It's actually really funny now when nurses who don't know him come in with a blood pressure cuff and start talking about an arm hug and the 2 year old is like, That's a blood pressure, not a hug.
PREPARING FOR IV STARTS, BLOOD DRAWS OR OTHER MINOR BUT PAINFUL PROCEDURES
I am 100% against the idea of tricking a kid and then sneak attacking them with needles or catheters or what have you; all it does is scare them more down the road and breaks their trust in you. For Ethan, before every procedure, we go over 'the order.' We started when he was tiny with just single word prompts, and as he's gotten older we've been able to expand that as his vocabulary expands. So, for example for a vaccination when he was a year old, we started with picky (his word for a needle), band-aid, boobums (his word for nursing). We now use a script that's more complete, but it still has key words and phrases that he can latch on to and repeat back to us. Him knowing the order helps him feel more in control over what's going on, and while it's happening we can talk about where we are and what's next. As he's gotten older, I go over the order and then ask him if he wants to repeat it back to me to make sure he knows what the plan is. We talk through each step and discuss whether each one will hurt or not, and if something's going to hurt we talk about whether it will hurt a lot or a little and for a long time or a short time. We are very up front about this, again because we feel it's so important for him to know that he can always trust us to be honest with him.
Another huge thing for us is giving him an option to respond physically to painful procedures in a way that doesn't impede whatever it is they're doing. When he was smaller, we would encourage him to kick his feet and scream, and that gave him something physical to focus on doing that wasn't pulling his arm away. We always make sure to explain to whoever's doing the procedure how it is that he copes so they don't interfere. So, for example, if he was in a foot-kicking phase, we would make sure no one held his legs down, and if he's in a screaming phase, we tell them that he's going to scream and to not try and shush him. It's always been really important for him to have a way to have that physical reaction. As he's gotten a bit older, we give him choices of how he could react (depending on what they're doing) and he decides what he wants to do. He's also gotten to the point where we can instruct him through the procedure to change methods if he needs to, so, for example, if he's kicking too hard and it's shaking the whole scene, we can get him to suspend the kicking for a little while. (That's advanced level stuff though.)
Here's an example of what it sounds like for an IV start:
Me: Okay, Buddy, we have to go get a new IV. [Stop and allow time for him to freak out. Don't tell him not to be scared or that it's okay or that it won't hurt. We always try to validate his feelings as much as possible, and correct people in front of him if they say things like 'Big boys don't cry.' They definitely do, and this all sucks so let's not pretend it doesn't. Okay. Off that soap box.] I know this is scary for you and I know you don't want to do it. I'm so sorry. Do you want to do the order? Okay, the order is: rubber band, cleaning, picky, tape, all done. The part when they put the picky in will hurt a little bit like a pinching but the other parts don't hurt. What do you want to do? Kick your feet or scream?
Ethan: I want to kick my feet and I will scream.
Me: Okay, and what will you do with your hand?
Ethan: I will keep it verrrrrrry still.
Me: Do you want to do the order?
Ethan: Yeah. Rubber band, cleaning, picky, tape, all done. Will I see my blood?
Me: [Realizes I forgot to ask if they're doing labs. Find out they are] Actually, yes, after the picky part they will get some blood. And then taping. So we have to change the order. Remember, we always make our plan but sometimes the plan has to change. [This is an idea we review a lot, that we can try to anticipate but sometimes things change.] So the order will be: rubber band, cleaning, blood in the tube, tape, all done. Do you want to watch your blood go in the tube?
Ethan: Yeah, I want to see it.
Me: Okay, so which part will be the hurting part?
Ethan: Just the picky.
Me: Will it hurt a long time or a little time?
Ethan: A little time.
Me: Will it hurt a big bit or a small bit?
Ethan: A small bit.
Me: And I will tell you the order while we do it, okay?
And then we go. If he's still really resistant we choose a reward for after and talk about that, like a show to watch or a lollipop if he's allowed. So there's a lot of repetition beforehand and during, emphasizing the order of things, what will hurt and what won't, and giving time to ask questions about the different parts if he wants to. I don't prepare him until right beforehand to minimize freakouts; it takes a while to go through everything, and I've caught a few people rolling their eyes, but then they see how well he does and how still he holds and they don't roll them the next time.
PREPARING FOR SURGERY / PROCEDURES UNDER ANESTHESIA
For procedures under anesthesia we do a similar prep, but we start a little earlier to allow time for questions (since anesthesia / surgical teams don't really have time to stand around for long Q&A's while they're waiting to go into the OR). This would obviously depend on the age of the child. When it comes to surgery, he's thus far been small enough that we haven't prepped him until the morning of, but with an older kid I'd talk them through it earlier. We talk in general terms about what they'll do, answer any specific questions, and then talk about what he'll see or feel when he wakes up. And then we do an 'order' prep for whatever will happen as he goes under anesthesia. Sometimes that's us holding him to be gassed down, an IM shot of ketamine before he falls asleep and is taken back, or an oral cocktail of medications, but we do an order for that and review before they do it.
Here's an example of what I might say during surgery/anesthesia prep:
Buddy, tomorrow you are having an operation for your heart. [Take time to validate the inevitable meltdown.] You will have special medicine when they do it so you will not know what happens and nothing will hurt. [We try not to say 'you'll go to sleep' because he has so many sleeping issues to begin with that we don't want to compound it with a negative association.] First we'll go to the hospital and the doctors will give you hospital jammies. They'll put stickers on your chest so they can watch your heart beat, and then they're going to give you medicine that will make you feel tired. I will stay with you until it's time to go for your operation. When you're finished you'll have a new scar and a new bandage there, and you'll have IVs in your hands and one in your neck. You might have a tube in our throat to help you breathe. We will be with you; you won't be alone and we will make sure they give you medicine to help you not be scared and for it not to hurt. Are you scared? It's okay to be scared. Even if you're scared you're still brave. Being brave means doing things even when you're scared. We are always very careful not to tell him to try not to be scared and are intentional to correct anyone who says that to him. Telling a child not to have normal, healthy emotions is never really going to work, so we use our time to try to provide him with concrete strategies that he can use to handle those emotions rather than unsuccessfully trying to control them and winding up feeling even worse about the whole thing.
If it's a big surgery and he comes out of the OR with a breathing tube, we continue to talk him through anything that's happening to him, even when he's asleep. This is a habit left over from my time as a PICU nurse, but I figure it's best to err on the side of caution even when we think he's sedated and not hearing us, just on the off chance that he can. While they wean sedation and he's waking up still intubated it's a lot of just quietly reinforcing what's going on, what the people in the room are doing, and what the next steps will be. We try as much as possible to be his voice while he's intubated and try to give him opportunities to nod or shake his head to let us know how he's feeling using yes or no questions. This is all very specific to the kid; some wake up raring to go and that tube is out in a couple of hours, but Ethan is a slow swim to the surface every time, so we typically have a day or two with him groggy but aware and still intubated, so working through ways to cope with the harder parts of having a breathing tube (kicking his feet while they suction, for example) is certainly appropriate there.
WAYS TO HELP WITH COPING DURING HOSPITAL STAYS
A huge part of Ethan (or any child) coping in the hospital is giving choices wherever possible. We always ask which toe he wants his pulse ox probe on, which armpit for a temperature, which arm for a blood pressure, and we respect those choices. If he has multiple meds, we let him choose the order, and where possible we accommodate him if he tries to refuse. So if he says no meds we say, You have to take your meds but you can choose if you want them now or in five minutes. Which do you choose? Sometimes we get lucky and that helps because it makes him feel like he's regained a bit of the control. I literally ask for his input on every single thing that I can do that he feels like he's running the show, from the position of his pillow to the arrangement of his stuffed animals to what he wears.
We also try to bring key comfort items from home, so he has his own pillowcase and blanket, his stuffed animals and his own water cup, his white noise machine, and his own clothes wherever possible. It just helps with feeling a little more normal, and it's all way more comfortable than hospital-issue stuff. We find that stretchy, short-sleeved t-shirts a size up and soft cotton PJ pants with slippers are a great combo for getting over IVs. Another thing I've seen is taking a t-shirt a size or two up, cutting it straight down the middle of the back, and then putting in a couple Velcro squares to hold it together. It makes a make shift hospital 'gown' that's super soft and cute depending on the design.
While we're in the hospital, (and actually before any doctor appointment) we review the plan frequently; it's slightly different from the order that we talk through before a procedure, but it's also really helpful for him, mostly at bedtime. I find it helps him relax if we talk together to the night nurse before bed about the plan for the night. For example: You're going to go to sleep and the nurse will come in two times to do a blood pressure and a temperature. We will wake you up one more time to do your breathing meds and pats [chest physio when he's having respiratory issues]. That way when things are happening in the night, I can remind him of the plan and where we are in it. No surprises over here. And then we always remind him that the plan sometimes changes and give him time to express his hatred for that when it happens. Okay Buddy, that's the plan for the night, but we know that plans can change. I will let you know if it changes. Then, if the plan changes, we use that same language again. Ethan, remember how we said the plan was for no pickies tonight? Well, you have a fever so the plan changed. Now we have to do a picky so we can check your blood. I'm so sorry that the plan changed. That's hard when that happens, isn't it? I can't stress enough how important it's been for us to be really intentional about allowing him to express his anger or fear or any other negative emotion as much as we can.
FINAL THOUGHTS
I know that some of these scripts may seem pedantic, but we've found that using the same specific words and phrases over and over has been extraordinarily helpful in letting him regain a sense of control when he's facing the hard things. He knows that I will always be honest with him, so when I tell him that something won't hurt, a chest x-ray for example, he trusts me and no longer fights me when I tell him that he needs one. When emotions are out of control, the familiarity of the scripts that we use with him is something familiarhe can hold on to.
I mentioned above that one of the things we always say is that being brave doesn't mean that you're not scared. And that goes for both kids and caretakers. When all else fails, stepping away and letting someone else take over while you sob in the shower is 100% appropriate. Because sometimes it's too much, no matter how much you try to make it better.
I hope you've found at least some of this helpful, dear internet strangers walking hard roads. I'd love to hear what other families have done that's worked well for their children; please let me know in the comments, and I'll add to this post as appropriate. I'd love for this to be a great shared resource for us as we fight alongside our children.
Peace and love to you on your journeys.
