Preparing for Surgery
So we got the call yesterday that surgery is a go. We don't have a specific date yet since the surgeon has to get special permission to perform the surgery at the Children's Hospital here (he's a geriatric dr) and we will have one more consultation first. But I believe in being honest and open and explaining things so he can understand. Eli's a bit older this time versus last time (last major surgery he was 3 1/2 yo). He also doesn't understand things auditorally (because of the bloodflow and strokes) so he does better visually. We have books we read and will talk about, but I'm not sure what pictures to show him to explain what's going to happen. This will take LOTS of repeating because he won't remember and I don't want a repeat of his 2009 surgery (he went scary crazy - no joke). And I'm more than likely going to need to prep him for 2 scars in 2 areas. They will be going through the neck (so no sternal issues to deal with) but they will also be taking his Internal Iliac Artery to use for the bypass (Carotid-Subclavian Bypass). I've never known anyone who has had this done, not even anyone older. So any pictures, suggestions, information (lurkers welcome), etc. would GREATLY be appreciated.
You are such a fine Mommy Angela! Even if you have no model to follow, parenting "from the gut" is often the best anyway!
I know you're scared Angela. We're all scared for you. But we have to trust that God is in control and that this is what Eli needs. Please keep us updated as you find out more information!
(((hugs))) I hope you can find some good pictures to help him. Just doing a google image search might bring up some useful things that you could print and make into a book for him.
Whenever I google I seem to bring up all the gorry (sp?) images. DH has a co-worker who actually is finishing up cancer treatment. She happened to have surgery I think in the general area of where Eli will have one of his incisions (his neck) so we were thinking about asking her if we can bring Eli over. Also another friend I actually met here at pg.org and on FB is in nursing school so she is going to see what she can dig up for me. The problem is Eli doesn't understand a lot and he forgets so easily.
I do a lot of social stories with pictures for my clients. I think you need to focus on what he is going to experience before and after. Here's an example:
- picture of the hospital, picture of the doctor
- picture of food with a slash through it (no eating/drinking day of surgery)
- if he's going to need to be shaved anywhere for the surgery, a picture of that
- picture of a kid in a hospital gown
- picture of an IV
- picture of an operating room
- picture of surgeon with mask, gown and head covering
- picture of gas mask used in operating room
- picture of recovery room or kid sleeping
- picture of a hospital room/ kid waking up
- picture of kid with bandages and/or scar(s) he will have
Do they allow you to be there with him? At our CH, they allow the parents to be in the OR until initiation of sleep. If they do, you will want to make sure that he knows you will be dressed up in a gown, hat and mask.
That's all I can think of. Let me know if you need any help. I usually search images.google.com. You can modify your search to limit it only to photos or only to drawings, depending on what you are looking for, or you can use a combination of both.
oh, and another thing. When you write the "story" to go with the pictures, use his name and write in the first person. (e.g. My name is Eli. I am going to have surgery. I will wake up early in the morning. I will be hungry, but I won't be allowed to eat. I will go to the Children's Hospital. There, a nurse will weigh me and take my blood pressure. I will go in a room with my Mommy. I will put on a gown and lie down on a bed. A nurse will put an IV in my arm... etc.) I wouldn't really say much about what they are doing in the surgery, because he's not going to be aware of it. I would focus on what's going on before and after and how he might feel before and after.
That is a really good way to put it. Part of the problem is I haven't been able to find pictures of the areas where his scars will be yet. Everything is too graphic. A friend is working on seeing if she can come up with something less graphic and more age appropriate for him so he can see what scars he'll have.
We will eventually start doing medical play therapy too. But I'm waiting to find out the date before we start that.
Oh and no they don't let you go back into the OR. They will medicate him before hand though. Hopefully they give him something way stronger than what they gave him for the MRA though because he still went off. They normally don't and I warned the drug dr (I'm too lazy to look up how to spell the real name). So he gave him something. Then when they tried to give him the mask he threw a HUGE fit.
Oh hey has anyone had their appendix out? Would that be similar in scar/pain/etc? Maybe I could use that for the tummy part of the operation.
I think the suggestions given offer super help! Very touching. Helps guide you forward.
As to the mask, now you know something to practice on before hand.
As a child, I was given a gas mask and thought they were trying to kill me. (I had been given no preparation.)
I can't help wondering if there aren't books out there already that could get you started. Maybe look here:
And although this is not like your situation, some of the ideas written about could help I think: Today's Hospitalist :: Tips for treating children with autism