My .02¢ on the subject of kids and information...

Anekka - I think Janon has great questions - things that need to be answered honestly, but in details according to her age and maturation.  I also agree with Susan that no one heading into this very invasive surgery needs to know the gory details of what goes on in the operating room.  It only gives you more anxiety, IMHO.  I think in Janon's case (and for children that age) should be the ones to initiate most of the conversation.  Let her ask questions, then answer them according to her level of understanding.  For example, if she asks if she's going to get pokes, tell her yes, but most of them will be done while she's sleeping in the operating room and she won't feel a thing with those.  The other pokes are very fast and that YOU (mom) will be with her the whole time.  Why do the doctors have to fix her back?  I would tell her something like "it will help you breathe better and have more energy to do all the fun things you want to do.  You have a special back that needs a little help from the doctors in Texas.  Things like that... does this make sense?

I would answer her questions as they come up.  Occasionally ask her point blank - do you have any questions about how you feel?  or about why we are going to Texas (assuming she already knows)?  I honestly believe that our kids feel the stress we have inside ourselves.  They handle the emotional stress MUCH better than we do, however, it can be very stressful for them.  Sometimes kids don't want their parents to see that they are worried, and they try to hide their fear.  Hopefully this won't happen because you are clued in to her emotionally and have a good communication.

Braydon watched the show last night at our neighbor's house.  The very minute the segment was over, he came flying into our house to look for his "hardware" to compare it to what he just watched.  I think Dr. Campbell's comments about how they adjust the rods once in place was good.  I also think it was very good that he emphasized the part about NOT doing surgery on the spine, but on the chestwall... then the spine just goes along for the ride.  Braydon is old enough and has been through these surgeries enough to know what to expect when watching the show.  I would not consider allowing him to see it if we were just getting started in the study.

I know you will do great.  Just keep asking questions and helping Janon have the confidence she needs to know she's a beautiful young lady, inside and out.  Once she finally has her implant, you will be able to look back and pat yourself on the back at this huge accomplishment that your entire family has been through.  And rightfully so.

Great job Anekka. It sounds like you are doing just fine, and Janon is too. Keep up the great work!

Braydon had to have the nasal wash with his implant and first expansion surgery. Since then, he hasn't needed to have them (2 years now). He is 9yrs old, so maybe being "older" makes a difference? Courtney - do you still have nasal wash/RSV tests? YUCK!

For little ones it is protocol during the months of Oct-March. They ask you to do the nasal wash in your hometown then when you have your pre-op done, they do it again. (This is for TX anyway, I don't know about the other sites)

Hope this helps!

Hi Janita,

I think there is a little confusion here re: the RSV nasal wash.  The nasal wash is a one-time TEST to determine if the RSV virus is in the child's body.  If the test is positive, they will cancel/postpone surgery - the child will not be a good surgical candidate at that time.  They do this for the children between infant and age 6-8 during the RSV season (Oct-Mar) so they do not have a harder recovery period.  If the child were to have full-blown RSV while trying to recovery from major surgery, they could have major complications.  It is a precautionary test, one that San Antonio is very strict about, but the other centers are not.  HTH

Hi Brenna,

I know how anxious you must be, with surgery just a couple of weeks away.  Its very normal to feel worried and to now know how to talk to your child.  My suggestion (and this is just based on our experiences) is to give her opportunities to talk, but don't push her.  Let her ask questions, if she wants, but don't force information on her.  She will obviously need to know the basics - why you are going to the hospital very far away (to have an operation on her back); that she'll be in the hospital for a few days; and that she'll be sore for a while when she does come home.  You could also practice the pre-op kind of things (i.e., listening to her heart, looking in her ears and throat, maybe even a bandaid or something) then let HER be the doctor.  Kids like to be "in charge".

I also know that at PCMC in SLC, they put the child to sleep before ANY IVs are placed.  The anesthesiologist will talk to you before the surgery time, so ask lots of questions.  If you've had good or bad experiences with surgery before, make sure they know.  They should listen to your input.  Dr. Smith and Melissa are GREAT.  If you have any questions, they are always good to answer them.  We *may* be in SLC on the 25th... I wonder if you will be up to visitors by then.  Where will you be staying?  Send me a private message if you would like suggestions or anything - if I can help in any way.

Take care and I'll be thinking of you both!

Brenna,

The only time she'll beep at metal detectors is if she has a type of metal that is NOT titanium.  Braydon's two rods are 100% titanium, so he does NOT set off metal detectors.  If there is any part of the device that is another metal (stainless steel, etc.) then she would set off a metal detector.  It is against the law to have a 100% titanium gun because they do not set of metal detectors.  Titanium is a lightweight metal that is very well tolerated by the body.  In all the times we've traveled with Braydon through airports, I've had my xrays handy, just in case, but we've never needed them - because he has 100% titanium.  Interesting...