Advice to Ease the Stress of Medical Procedures/Surgeries

[Guest guest]

Noah's had numerous medical procedures and surgeries throughout his

life. We first chalked up his quirky ways to delays in his development

as a result until age 8 when Asperger's was diagnosed. But by the

grace of God, I responded to Noah the way he needed to be responded to-

-as an Aspie--during the years of medical intervention when we had no

Asperger's understanding.

If your child needs to have any procedure done, especially surgery,

the best advice I can give you is to never show him/her your fear,

never. Secondly, unless you are forced to leave his side, stay with

him--all the while remaining calm, collected and caring--through the

whole ordeal.

No matter how traumatic the situation was for Noah, I was by his side

unless I was asked to leave. I explained every move the nurse or

doctor made to him over and over again and even used special names for

routine exams such as blood pressure: an arm love, when his

temperature was taken I'd first say, " listen for the beep! " , when the

pulse ox was placed on his finger I'd ask, " Where's " ET " (even when he

had no idea who ET was)

As Noah got older, I allowed him to " take charge " of his health

care by respecting his need to ask his medical team a million

questions prior to each and every visit, lab, procedure or surgery.

During his early years, our two hour ride to Chicago was often filled

with questions, the same ones, the entire trip.

If you take your child to a teaching hospital, request NO student

doctors (residents). I learned this the hard way by unknowingly

allowing doctor after doctor do the same routine exam (blood pressure,

heartbeat, check in ears, temp, etc) prior to THE doctor coming into

the room. As I see it, there are plenty of other

children for them to practice on, they don't need to learn the basics

from a child who's on the spectrum.

Lastly, I played soothing music on a tape recorder while Noah

stayed in the hosptial. I did this just because I wanted him to sleep

to pleasant sounds other than machines but later learned music therapy

is extremely beneficial under those circumstances.

Noah now talks like an M.D. He uses terms like " blood

draw " , " cardiac cath " , " echo " , " labs " , " EKG " and the like. He takes

around 20 meds a day and knows the name and dose of every one of them.

We no longer have questions while going to Chicago other than " Will I

have to have an IV? " and " Will I be admitted? " but they're only asked

once.

Another thing I HIGHLY recommend for your child when he/she needs

an IV is EMLA cream. It's anesthetic cream that numbs the site prior

to the poke. I requested Emla be put on Noah's wrists and arms when an

IV was needed. This way if a vein couldn't be found, other numbed

areas were available. Most nurses and doctors don't tell parents about

Emla because it takes 30-60 minutes to work; they don't want to have

to take the time for it to kick in. However, unless your child needs

an IV immediately, there is NO reason to have them endure the pain of

one.

Medical tape such as tagaderm (transparent very sticky tape that

cocovers IV sites) should be removed with (shoot, I forgot the name!)

anyway, the small pads have adhesive remover in them and make removing

painful sticky medical tapes a breeze. If none is available, thell the

nurse you want to leave all sticky things on until you get home (of

course with the exception of an IV). Many times Noah went home with

little pads stuck to his chest from an EKG or for leads to a monitor

after surgery. They came off in the tub days later with out so much

an " ouch " from him. Had they been pulled off in the hospital,

the adhesive on a sensory challenged child can be brutal.

Granted, our situation is extreme but my point is medical

intervention and the trauma a child on the spectrum goes through can

be greatly minimized just by taking the steps I've mentioned.

How we as parents respond will have a major impact on our child's

experience. If you remain in the mindset that you are his/her

advocate, you will think of questions like, " Do you have anything to

numb the IV sight prior to poking him? " long before you ever knew such

thing existed.

Kelley

[Guest guest]

one more thing I would add to this awesome post is to let all the caregivers know about the diagnosis. it makes it less stressful for them because they don't want a child to have a traumatic experience. btw-emla is a standard procedure for IV starts in the peds unit at the hospital where I work. also ask if they could use a vein finder for the iv start. lessens mistakes and multiple pokes. and ask if there are student nurses on the team that they not use your child as a guinea pig. dee

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