Telling a child about their surgery

[RI Mom]

I haven't told Idrees (aged 6) about his surgery yet but I need to do so soon. I have a plan in my head about how I will tell him but honestly, I'm scared to death. He has significant fear of all things medical due to the amount of trauma he has faced in the past. These are the things I am planning: Pick up his older cousin who he adores and have him with us, read the little book that Idrees wrote for CHD week about his last surgery, explain to him that one of the parts in his heart needs to be fixed again and that he will go to the hospital with me to have it fixed, answer questions, take the boys out to the store to pick out some of the DVDs and coloring books that he can use in the hospital. I have also ordered this device called "Buzzy" that is a needle pain reducer that supposedly tricks the nerves to focus their sensation on the vibrating freezing "buzzy" device instead of the shot/IV site. I thought that I could get that out and let him try it out and see how that might help him deal with the anxiety of needle sticks. What do you think parents? Anything else? Too much?

 

[kfay]

It is too bad that your six year old has had such traumatic experiences with medical care. It makes me wonder about his health care team who has taken care of him in the past. They should have tried harder to make things less traumatic for him. For example, I know they can put a numbing cream on their skin before they are going to give a shot or insert an IV. When we lived in England and my son had to have some minor surgery there, they always put this on him, and I remember thinking at the time, why don't we do this in the states?

As an adult with CHD, I spent more than my fair share of time in the hospital as a child. As weird as it may sound, I actually look back on my time in the hospital somewhat fondly. I loved my pediatric cardiologist and the nurses were always very good and kind to me. I think you need to have a talk with both his cardio and surgeon, if you haven't already, to try and figure out a way to make this less traumatic for him. Maybe they can even give him a small dose of valium, if need be, to help relax him before they insert IV's, etc.

Unfortunately, as you know, this is something he will be dealing with for the rest of his life. As a now 46 year old woman, I'm sitting in Rochester waiting for an ablation on Monday at the Mayo clinic. I have always had to see a cardiologist for my heart at least once a year and sometimes as often as every three months. Somehow, his WHOLE medical team needs to come together to make this a positive experience for him.

As far as your plan goes, I think it sounds good. It's good you haven't told him too early if he is going to have alot of anxiety about it. Be sure to explain to him that the "bad" or "traumatic" things that happened last time don't have to happen this time.

I'm sorry that you have to go through this. As a mother myself, I know it would break my heart to have to deal with one of my children in a similar situation.

I wish the best of luck to all of you.

Kim

 

[Ross]

I'd certainly alert this team taking care of him now, to the past. If they know about it before hand, they'll do their very best to minimize the situation as much as possible. There is no good way to tell someone they have to have surgery again after being traumatized. I don't care if your 4 or 84. It's the first thing that runs through the mind. I'm the same way. I was so paranoid of a bed after the last time that to this day, I still have problems climbing into it. (Shut up Bina, I can hear that remark before it's even said)

 

[MissMelis]

Theresa -
I agree with Ross, maybe just mention to the docs and nurses how rough he's had it in the past. I'm sure they'll make the extra effort to make this easier for him.

I wish I remembered how my folks told me I was going to have surgery - but I don't. It's different in your case anyway, since Idrees already has the medical fear.

I think that your plan to tell him sounds really good - if he's surrounded by people and things that he loves, it might make the news a little easier to take. It sounds like you're really put a lot of thought into it.

I feel for you, Theresa - not an easy task. I wish all moms could be like Heart Moms.

I really hope it goes well. Will be thinking of you!

Melissa

 

[Tbone]

As a child my parents were always truthful to me about my surgeries. I respect them for that.

As far as the needles go you can, for example, say his favorite treat is tootsie rolls for every shot or blood draw you could have the nurse bring one in as a reward. DO NOT KEEP THEM IN THE ROOM. Plus the staff bringing in the reward makes the staff more caring, thus hopefully the patient will be happy to see them.

I hope everything turns out well for you & your family. Good luck & God Bless.

 

[Lynlw]

Your plan sounds pretty good, altho it sucks that you have to do this, I know how hard it is. Justin was never Idreees age for his surgeries, so I can't offer any age specific things that might help. How much time ahead of surgery will you be telling him? I know there is a recomended time by age, but can't remember it and of course each child is different. Since he had surgery 2 years ago, I'm sure he remembers some of it.
I'm sorry Idrees has had traumatic times in the hospital before, luckily for us, Justin never really had that to deal with, and considerring he spent most of 6 months in and Out of Chop after his Rastelli, from 18 months -2 says alot about how special the team was at the time. like Kim most of Justin's memories of the hospital were good, the playroom, legos ect. I haven't heard of Buzzy, but I know Emla cream is wonderful for numbing the area to get shots/ivs Buzzy sounds good, but I wonder if some kids might get upset when they see it because they know they'll be getting a shot? One thing I like about to 2 Childrens hospitals Justin stayed in was their rooms were "safe" and places they wouldn't get hurt, any ivs ect were always done in the treatment room, so the kids didn't get nervous every time someone walked in.
I'll keep you both in my thoughts

 

[Lisa in Katy]

Well, neither of my children was a heart child, but from being a mom and working in a hospital and as a teacher, I can tell you that a lot depends on the parent and the child. I remember the first time I took my daughter to the dentist, I wanted to go back with her. The nurse suggested that I stay behind, but that she would get me if they needed me. I knew good things about this dentist and his staff, so trusted them. I noticed a poem in their waiting room that said something to the effect that nervous hovering moms make their kids nervous. Whenever they needed shots, I explained that it would hurt (not just like a mosquito bite which is what some nurses will say), but the pain would be over quickly and the medicine would keep them healthy or cause them not to feel the worse pain (like a filling). When my son needed surgery on his broken arm at age 7, I explained the IV and the procedure in kid friendly, but accurate language, ahead of time and he did fine. Was I nervous? Yes. Did he know it? No.

Your plan sounds good, but if he is already nervous about it, be careful not to overdo it. Talk to his doctor and the other care providers about his fears, but do this when he is not around. If he thinks that you expect him to be scared, he will be. I don't know about the buzzer thing because I think it places too much emphasis on something that is not really that bad. Yes, it hurts, but not as much as a skinned knee.

I once attempted to take blood from a 10 year old girl. The mother met me outside the room, told me the girl hated shots, and wanted me to "sneak up and do it fast." Apparently this is what they did with vaccines, but I explained that this was impossible because of the tourniquet, finding the vein, etc. So the mom walked in and said, "Well, let's get this over with," grabbed the girl's arm and held it tightly. Needless to say, the girl went into hysterics before I even brought out my needle. The ER doc forced the mother to leave the room, calmed the girl down, and I took her blood without a problem. The mother was livid that she was treated that way. I was 19 and this experience taught me a lot!

One of my former first graders had cancer and had been in and out of the hospital since he was 4. I was amazed at how a young child could go through those treatments. His mom said that he never cried, and she once overheard him talking to another cancer patient in the hospital. He told the little boy very matter of factly, "The needle will hurt and the medicine will make you sick, but you need it to stay alive. You don't need to cry because staying alive is a happy thing. When you get out, we can play again." She said that she had told him something similar before getting his first chemo treatment, and it obviously worked, because now he was a pro and passing on advice to the newbies.

 

[RI Mom]

Thank you all for the advice so far. I may have used the term "trauma" too loosely. What I meant to say was that my son has experienced a lot of fear due to the frequent blood draws required after he was placed on an anticoagulant. He was a very difficult stick as a young child and often it would take several attempts and even bringing in an Anesthesiologist just to get a blood draw. The team attempted to draw from an IV port that had been placed but eventually that vein failed so it became a frequent struggle just to find an adequate vein. Upon leaving the hospital and before I had his in-home monitor, I was taking him to the lab 2-3 times per week where the staff would have me hold him and wrap my legs around his legs (basically restraining him) in order to get a draw.....hence the reason that I want that home monitor in the hospital.. So the memories of this make it even more concerning about how I will tell him about surgery. I did call the Child Life Specialist who suggested using the Treatment Room, like Lynn said, it allows the bed to be the safe place. I love the lollipop idea too. We'll add that to the plan. I guess if I can tell him to share with me what he's afraid of and then together come up with a plan for how we'll deal with it will be helpful. Who knows, he might surprise me and say "Ok, can my friends visit?"

I'll let you know how it goes. I plan to tell him 6-7 days prior to the admission.

 

[Lisa in Katy]

Those lab techs who made you hold your son down did him and you a disservice. I can't believe your doctor or the lab couldn't find a place that did finger sticks so it wouldn't have been so bad. He's a little older now and can communicated easier, so hopefully you can sit down ahead of time and make him more comfortable.

 

[Lynlw]

Thank you all for the advice so far. I may have used the term "trauma" too loosely. What I meant to say was that my son has experienced a lot of fear due to the frequent blood draws required after he was placed on an anticoagulant. He was a very difficult stick as a young child and often it would take several attempts and even bringing in an Anesthesiologist just to get a blood draw. The team attempted to draw from an IV port that had been placed but eventually that vein failed so it became a frequent struggle just to find an adequate vein. Upon leaving the hospital and before I had his in-home monitor, I was taking him to the lab 2-3 times per week where the staff would have me hold him and wrap my legs around his legs (basically restraining him) in order to get a draw.....hence the reason that I want that home monitor in the hospital.. So the memories of this make it even more concerning about how I will tell him about surgery. I did call the Child Life Specialist who suggested using the Treatment Room, like Lynn said, it allows the bed to be the safe place. I love the lollipop idea too. We'll add that to the plan. I guess if I can tell him to share with me what he's afraid of and then together come up with a plan for how we'll deal with it will be helpful. Who knows, he might surprise me and say "Ok, can my friends visit?"

I'll let you know how it goes. I plan to tell him 6-7 days prior to the admission.

My only thought about the lollypop or something you eat, would be it could cause problems IF he thinks he will get one after any needle/test ect since he probably will not be able to have them when they are putting in IVs ect before surgery or right after. Does he like stickers or something like that that he can count on and there wouldn't be anytime he couldn't have them?

 

[kfay]

Or how about just having a "goodie bag" that he can reach in to grab a treat. You can just go to the dollar store and get things like cars or toy soldiers or anything that he might be into. I used to use that trick when we had to fly back and forth to England. When my kids started getting restless, I would pull out this bag and they could stick their hand in (no peeking) and pull out one "treat". Then you won't have to worry about the whole "no food" thing before surgery.

 

[Philip B]

Specialist

Specialist

It sounds like you may have already found part of your answer...if the hospital you're using has a "child life specialist" who acts as an advocate for kids, work that relationship to insure that your son isn't traumatized.

-Philip

 

[Lynlw]

IF I had one suggestion, I would get a small pillow or something like an uglydoll, to hug after surgery, it helps alot with the pain when you cough laugh ect. We used uglydolls for Justin's last few surgeries and had donated some to the hospital he had some of his surgeries at since they were a good size for most kids to use and alot of kids like them. Justin also made a bunch of small pillows out of fleece and they worked really well, from the feed back he got from the social worker and nurses. They were easy we just made rectangles, since they were making alot (it was his scout project) but alot of fleece has characters you can cut out, we did a flower for his cousin when she was having her surgery.

 

[cherylchapa]

I have no advice about how to tell him. But does your hospital use the new air injected anesthetic for IV's and blood draws? When we went for Chris's cath they used it and he felt nothing. He still freaked out when he saw the needle but the child life specialist was able to distract him eventually. When it was all over he was surprised that he didn't even feel it. And the air injector is so cool and space age. Chris said he is no longer afraid of needles as long as they have that Star Trek shot.
I hope you can find a way to tell him without too much drama. Good luck.

 

[Beha]

I don;t know about telling him about the surgery- but as far as IV's and such go-Emla cream. best stuff ever. I don't know why some hospitals just dont seem to use it. ask for it, use it, its awesome.

 

[RI Mom]

We have used EMLA or LMX in the past and it does work but then they cover it with the plastic that has an adhesive around it so when that comes off, it's like pulling a bandaid and that is bothersome to. I spoke to an ER pediatrician who suggested that I ask about the Star Trek thing that Cheryl suggested or that (get this) I take Glad Press and Seal to the hospital and make them use it on top of the Emla or LMX. No adhesive but it covers just as well as the hospital plastic cover with adhesive. I thought that was a brilliant idea. Good point about the lollipops. We already have food issues with him that go back to being fed constantly as a failure to thrive infant so maybe a grab bag would be better but I could still do lollis as a treat just for being a trooper. Thank goodness for this forum and the experienced patients and parents of patients who are willing to share...I really appreciate it!

 

[ALCapshaw2]

SNIP - He still freaked out when he saw the needle but the child life specialist was able to distract him eventually.

As a kid, I had a terrible shot in the leg because I tightened up before the injection.

Ever since, I close my eyes or look the other way and let the Target Muscle go LIMP.

It's OK to tighten up ANY OTHER muscle or bite a stick (e.g. tingue depresser), just make sure the target area is Limp.

 

[briansmom]

Theresa,
I don't have any better advice than you have already gotten. My heart goes out to you and Idrees. I hope all goes as well as possible.

 

[RI Mom]

So I told Idrees tonight about his surgery next week. I had his brother and his cousin with me and we were playing with this new device I bought that is suppose to help with needle pain called Buzzy. It is a vibrating hand-held device with a cold pack attached. The premise is that it tricks the nerves to focus on it and not on the needle stick. Anyway we were playing with it, Idrees was giving everyone "shots" and then I just told him that we could try it out next week in the hospital and then explained that one small part of his heart needed to be fixed again. His response..."AWWW MAN!" He pouted for a few seconds and then his cousin reminded him about how many friends came to visit last time and that they brought presents and played in the play room. That perked him right up and they continued to play. I asked him a minute or two later if he had any questions and he said "no". It went much smoother than I thought....maybe I'm the one whose been traumatized, not him!! I'm sure it will likely come up again but I will try to keep us all busy these next few days so we don't have too much idle time to worry about it.

Thanks everyone for your words of wisdom. I'll let you all know how this Buzzy thing works out. For information on it see their site www.needle-pain-management.com

 

[Lisa in Katy]

Playing with your friends in the playroom solves so many problems! I'd say that's a pretty typical 6 year old. Congrats on the success! When my son was 5, I stressed about explaining to him and his older sister that his Papa and Nanny were getting a divorce. Finally I got the nerve and told them, saying that Papa was living in an apartment but we could visit. His only question was if Papa's apartment had a swimming pool!