Why I am in a Children's Hospital When I'm 37yrs Old?

[Guest guest]

Many people have asked me why I am in a Children's Hospital When I'm

37yrs Old?

Here are some of the reasons.

I have a child sized body- SMA and OI have me at 63lbs at around 5ft

tall. I take about a size girls 14 or xtra small juniors for

clothing. The largest gauge needle anyone can use on me is a 24

gauge. Most adult and general hospitals don't have the right sized

anything for me. Childrens is the only hospital to adjust medications

to my size. Adult hospitals prescribe meds by my age. Even things

like barium drinks, contrast dyes, are applied in much largere

amounts than my body can handle by adult hospitals. Needles, caths,

blood pressure cuffs, even some e.k.g and other essential life

sustaining gear are all needed in pediatric sizes for me.

Some drs make me out to 'wanting to be in pediatric care' because I

had 'some psch issue going on'- One resident on this last hospital

stay was so closed minded to this reality for my life that I finally

said: " Would you like to be in an i.c.u. situation and they only have

an adult sized foly cath when you need a pedi size? " - this dr just

stared at me and dropped the argument after that visual.

Another reason for me being in a childrens hospital is that all my

specialist are here. - I've tried continually since I turned 18 to

find adult hospitals and specialist to take over my care. The ongoing

problem is since people with my severity of sma have not lived to

adulthood until recent times, there are no drs at adult hospitals

with any clue of what to do with me. Adult specialist do not

understand how frail my body is. They often will misdiagnos and fail

to correctly treat medical problems because they're blaming any

complaints on my disabilities.

Now I have to educate childrens staff on some stuff now because an

older sma-er has more age related medical problems than a younger

person with sma-but with adult hospitals-I have to explain with hand

puppets and a pointer on how a wheel on a wheelchair rolls! (Now

think of trying to do that when you're sick, medicated or

unconscience)

The thing with the general philosophy of childrens hosp is to listen

to the patient, let family and carers of the patient have access to

treatment- ie- you're pca, etc, isn't locked out during non 'official

visiting hours' or kept in a waiting room while staff that don't know

how to move you, drop you on the floor during an xray,- and to try to

make the hospital experience as stress free as possible.

Children's Hospital has taken distraction to a level of it's own

science and art. Every room has a tv, kids shows are playing in every

waiting area, depts have a vcr and film library for patients to watch

during a nuclear scan, infusions or other tests that need you sitting

still (I usually watched regular tv, soaps, Montel, Oprah, during

tests and miniseries from my local library during 8-10hr infusions).

During iv and needle insertions, childrens hosp did a ground breaking

study where the on staff clown docs (for real) had to be present to

distract kids at every i.v. insertion (at the dept for dialisis &

chemo)to distract the patient. Another part of this study used tv &

vcr distraction. They found that the perceived level of pain went

down, and future i.v.s went along better because the anticipatory

stress was less.

Now the clown docs don't treat every patient as if they're the same

age. When this study began I was like:- " great I'm about to have 'fun'

inflicted on me " -. The clown docs hung out and did stand up comedy

for my room, the next room got balloon animals, kazoo music, and

rubber chicken dances. The clown docs adjust their act to the age

group, and will also go away if you hate clowns. It's not like a

costumed character comes around for kids to get scared of (there's

drs for that job-kidding!)and imposes themself on you .

True all hospitals should learn from those concepts. Here's why they

don't- imagine how noisy, miserable, and out of control any hospital

would be if 90% of it's patients were scared crying acting out

children with stressed out parents being told to stay out of the

room? You could imagine why childrens hospital would forgo the rules

& regs adult hospitals have kept in place since the 1940s. If family

can stay with the patient, the hospital has a path of less resistance

to do their work, and unnecessary stress is therefore avoided, in

other words, everyone come's out of the experience a 'winner'.

Another observation I've made is that patient care is monitored

better at Childrens hosp because there is more family involvement.

People are more likely to report mistreatment of a patient or

unsanitary conditions when children are involved.

An example of a comparison of this is my recent Lahey hospital

appointment where I saw an older man taken from the ct scan room on a

gurney and put in a hallway with nothing on but a short tshirt and a

foley cath. Six staff members hung around and did nothing to cover

this man for over 15 minutes. During this same appointment I watched

a man who was on precations get put in the general waiting room up

against a row of waiting patients. When a nurse came in and had a fit

the ct scan staff said " we're busy, we don't have time for

precautions! " . When I called to report these issues I was told " you

can't report other patients problems to us! " (I did point out that it

is a problem for this patient to be exposed to other patients

precautions, and mistreatment).

Families and the media would've gone on the warpath if this same

treatment of Lahey Clinic patient had happened at Childrens Hospital.

Now don't get me wrong, Childrens hospital is not Shangrila or

paradise. Nowhere is. Childrens has screwups and it's own problems.

I'm no devotee to anything to the point where I can only describe

them in hearts and flowers.

So there you have my reasons for choosing to be an adult pediatric

patient