[tri-med] Re: Alex is back home

Wow, Karen!  I finally read your post--what an ordeal!  Sometimes it amazes
me how long it takes medical professionals to realize that we (seasoned
parents of disabled kids) actually know our kids and actually are familiar
with the medical issues they have!  We seem to be visiting the hospital way
too often these days, so I haven't had a problem there, but we recently were
approved for PCS care (basically babysitting by Certified Nurses
Assistants--I'm not sure who certified them and what they are certified for,
but whatever!), and some of the providers seem to think they know more about
taking care of my daughter than me.  For instance, one changed the position
of her oxygen tubing from going behind her head to around her ears and in
front of her neck.  Now, I know that's a common way of positioning it, but
we have it the way it is for a reason.  So after the provider left, the
first thing Elanor did was rip that puppy off her face, and turn a lovely
shade of blue/gray.  It's nice when people actually realize when you have
been caring (and well, thank you!) for your kid for almost or over a decade
and kind of know what you are doing!

I also have to comment on the doctor going over Alex's chart.  When we got
to pediatrics last week, the nurse assigned to us requested Elanor's chart.
Apparently she didn't know Elanor.  The nurse who went to fetch it came back
saying, "You want the whole thing?  Um, I don't think they will want to send
it.  You will need a cart to get the whole thing up here."  Ha ha!  I think
Elanor will need her own wing to store her chart before her time is up! Hee
hee!

BTW--she is doing well.  We are going to go with the trach, since it will be
able to help us suction and we can hook up her bi-pap to it.  She may need
that pressure support for some time, and especially at night, and we can
hook it up directly to the trach.  She also needs surgery to lengthen her
rods every 3 to 4 months, and they won't have to intubate now.  I got to
thinking about quality of life, and if she has to wear a c-pap mask for
hours during waking hours, she would be absolutely miserable, as well as
trying to take it off constantly.  It seems to be the best option, and it's
not a guarantee that it is permanent.  I hear that they make designer trach
ties...


Jennifer Vanderbeek
Boise, Idaho, USA
Mom to Arwen (10); Elanor (8), Trisomy 18; Caregiver to Joe (29), Cerebral
Palsy; and Wife to Andrew (I'm not telling how old he is because he's
younger than me!)

Check out Elanor's CaringBridge site at:

http://www.caringbridge.org/visit/elanoranne 



                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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