Parent’s Name
Address
September 24, 2012
RE:
A*****
P*****
DOB
Insurance
Company & ID number
To Whom It May Concern:
My son/daughter, *****, is medically
complex. His/her current diagnosis
include:
List
ALL diagnosis (ours is about 17)
Chronic cuteness
He uses: (List all equipment)
LTV 1150 ventilator,
dependent 24/7
Humidifier
High-flow oxygen
concentrator
Devilbliss suction machine
Pulse oximeter
EnteraLite Infinity
feeding pump
BAHA hearing aid
EaSys Exomotion wheelchair
(Describe
your child and their abilities.
Try to address all body systems, including emotional and social as well
as physical.)
Currently, ***** is ** months and sitting
with support, and for up to a few minutes without support. He has started rolling over, but only
when he is in a completely flat position.
Due to the need to raise the head of his bed, he does not have the
opportunity as often to practice this.
In fact, over the past two months, he is rolling over less and less
because he does not often get “practice time.”
He purposefully uses his hands to bring
objects to his mouth, hit at his toys, and turn on his music with an adaptive
button. He also scoots around by
rocking his body back and forth.
He participates in physical therapy, occupational therapy, developmental
therapy, and hearing therapy.
Developmentally, he is at about a six to nine month level. He will continue to reach
milestones until about an 18 to 24 months developmental stage. He is not expected to develop
intellectually or physically beyond there.
On the average, children with Trisomy 18
sit with support at 20 months (18 months for A****) and on their own at 38.5
months (26 months for A****). They
first roll over at 30.5 months (24 months for A). In the future, we expect A**** to reach other milestones
such as crawling and cruising furniture.
On the average, children with Trisomy 18 do this at 52.7 and 72 months
respectively.[i] Based on current growth charts and his
percentiles, we expect A**** to reach a standing height of 37 to 48 inches at
full growth.[ii]
A**** currently uses a drop-side crib to
sleep in, on the highest level, so he can be reached for care-giving. Because he needs his head elevated, we
have placed a couch cushion under the head of his mattress to elevate his head
about 20 degrees. We also use a
smaller pillow under his knees to help keep him in an upright position when
sleeping. When sleeping, he will
often move this smaller pillow over to the side, freeing his body to slide down
a level position, without his head raised.
A****’s rigid trach was changed for a
flex-end trach mid-July 2012 because of trauma to his trach stoma. Because he is moving and rolling so
much more, the combination of the ventilator circuit and the rigid trach was
causing frequent tearing to the stoma.
The flex-end trach allows for more movement with less stress to his
stoma. However, when A**** sleeps,
water from his circuit gathers in the outer cannula of his trach. When he moves, it then dumps down his
trachea and into his lungs, causing fluid in the lungs and oxygen desaturations
into the 70’s. It takes
suctioning, high levels of oxygen (7-10 liters/minute) and up to an hour to
recover when this occurs. He will
also have increased secretions, plugs and oxygen requirements over the next few
days. When he is awake, he moves
frequently enough that there is no accumulation of water.
(Detail challenges and hospitalizations from the past that can be minimized by having the new bed.)
A**** has had 21 inpatient admissions
since his initial discharge from the NICU at two weeks of age. Sixteen have been for respiratory
issues, with the other five being surgery or inpatient studies. Of those 16, six required stays in the
PICU to restore his health.
(Explain
what is needed in a bed, probably don’t want to specifically address which
bed.)
A**** needs a safe place to sleep and
play. His head and knees need to
be elevated when he sleeps to prevent water in his lungs, causing more
pneumonias. He needs a flat
enclosed surface to play when awake.
He cannot simply be placed on the floor, because he travels and his
ventilator does not. If he is on
the floor, he must have someone by his side at all times. We have a very busy household. A**** is the youngest of nine children
and it is simply not feasible to have someone with him every moment.
Also, his physical limitations cause him
to be in his bed most of the time.
It is important for him to have as unobstructed view as possible from
his bed. Because he has
significant hearing loss, visual stimulation is that much more important. He needs to be able to see clearly the
environment around him. A clear
plexi-glass window will provide the least restrictive barrier to his
vision.
The double-sided feature is also
necessary for A****. One several
occasions, paramedics have been called to assist A****. They move his bed into the middle of
the room and work from both sides.
When he was life-flighted at five months old, having the ability to have
more than one person at his side saved his life.
Prior to his new trach, A**** slept on a
flat surface. We have now resorted
to elevating the head of the mattress with a couch cushion. However, this does not allow him to lie
flat when awake and playing, and we are already seeing a decrease in his
efforts to roll over. Not only is
this an important skill for him to develop, it also increases the health of his
lungs as he moves around and repositions himself.
(Describe
where the set up will be and if it can support the bed and electrical
requirements.)
His room is 11.5 x 12.5 feet and has
several grounded outlets. This
includes two not currently in use on the side of the room where his bed is and
three on the other side of the room.
Sincerely,
My Name
Good Contact Phone Number
Well written! Your story is an encouragement to us. Our daughter will be 1 year old tomorrow, with full Trisomy 18. She has surpassed so many doctors' expectations, and we expect her to continue!! Keep up the good work!
ReplyDeleteI am so excited for you! Happy Birthday, little one!! Do you have a support group you're part of? I assume your doctors are supportive. This is such a wonderful milestone, and wishing you many, many more.
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