[Dysphagia] Fwd: RE: question

[neversayuncle at sbcglobal.net (Amy Jamison)]

Amy Jamison <neversayuncle at sbcglobal.net> wrote:  Date: Wed, 6 Jun 2007 16:59:32 -0700 (PDT)
From: Amy Jamison <neversayuncle at sbcglobal.net>
Subject: RE: [Dysphagia] question
To: Nancy Murray <Nancy.Murray at intermountainmail.org>

  Thank you so much, guys, for your responses. I have requested the physician to order a swallow study and have a call into the pulmonologist as well. I forgot to mention that earlier. I just want to maximize the time between now and then as well. 
  As far as trach care...if I don't do it, I'm afraid it won't get done, that's the only thing. It stays a bit yucky. They had a home health nurse and they "kicked her out" because they didn't like her. Truly, the father is very caring, though uneducated, and if I can convince him to stop feeing orally, I will. Otherwise, i will contact necessary agencies. Thank you for that advice. As far as not touching it with a ten-foot pole :), I'm in that dreaded place...need experience to gain experience. However, since I sent the panicked email, I spoke with my intern supervisor and she said she would guide me. So, I feel more at ease now. I think you are both right, too, about safety first. I am just going to have to lay it on the line for the family as far as her feeding. 
  Can I ask what SV stands for? I'll probably say a big "duh" when you tell me. But I want to know answers more than I'm embarrassed to look stupid. It's a gift.haha
  Thank you again everyone for being such a great resource! I feel fortunate to have stumbled onto you!
  Amy 

Nancy Murray <Nancy.Murray at intermountainmail.org> wrote:
  Priortize by need. Do the parents need education first etc. A SV
should go no as soon as able . I would ask why one was not place in the
hospital? You my have reason that the child cannot tolerate a valve.
In-line valves seem harder for kids to tolerate than regular valves. I
do nNOT clean trachs, but I would get nursing support to help the
family. 
Again to prioritize, I would take care of safety fiorst and then move to
what family is priortizing. I certainly would be doing tons of sensory
work-all sensory modes. How's hearing? Do9es this kiddo like music?
It is often calming. I'd look at the Sound Health CDs by advanced brain
technoogies. Sound Health CDs run about 15.00. They are worth having
in any practice.
Hope this is a little help. Feel free to call if you have additional
?s. I've been doing pediatric feeding for 20 years
nance 

-----Original Message-----
From: dysphagia-bounces at dysphagia.com
[mailto:dysphagia-bounces at dysphagia.com] On Behalf Of Amy Jamison
Sent: Wednesday, June 06, 2007 1:35 PM
To: Dysphagia at dysphagia.com
Subject: [Dysphagia] question

Hey guys,
It's the newbie lurker here and I have a question. 
I am wanting suggestions of what I could do with a new client to our
clinic. This is only my fourth week of practice, and I have already
encountered things with peds that I was never exposed to in our program.
I'm a little overwhelmed, but am eager to learn.
This client is 2 years 9months. She lived her first two years in The
Arkansas Children's Hospital. She is pegged, trached, on vent at night
(just got off the vent during the daytime). Socioeconomic issues and
parent education presents a problem, but father appears eager to learn. 
Cognition is low, though to difficult to ascertain, of course.
Physically she is very frail...maybe weighs 10 pounds. Against medical
advice, parents are feeding the child orally. 
Trach care is yuck, vision poor but she does at least see forms to
identify favorite toys. She can grasp items fairly well. She can wave hi
and bye. She cries with displeasure when not allowed to have what she
wants. The extent of her play skills are just shaking rattles or putting
things in her mouth. 
I want to maximize my time with this child. WHere do I begin? Or
prioritize?
Trach care? 
Oral Motor or Sensory?
Augmentative? (had our first PECS session today and she did well)
We NEVER learned how to clean trachs at the U of A.... decide to when
to get Passy Muir, etc. Please give me all the advice you can. I have
called various therapists, but am wanting all the advice I can get. 
Thanks so much,
Amy


"There are years that ask questions and years
that answer." - Zora Neale Hurston
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  "There are years that ask questions and years
   that answer."  - Zora Neale Hurston



"There are years that ask questions and years
   that answer."  - Zora Neale Hurston