I am doing lots of research on the feeding tube just to make sure this is what is going to help matthew. I want to do what is good for him and so far I am still going to see the surgeon for a consult next Thursday. Sorry it's not formated correctly but I don't have time to fix it.. lo. Maybe later. This happpened when I "Copied and Pasted" it....
Evaluating a Child for Gastrostomy Tube Placement
Athos Bousvaros, M.D., Dept. of Gastroenterology,
Children’s Hospital, Boston, MA
allergy, or incorrect preparation
of formula. In these
cases, treatment with the appropriate
formula or medication
may increase oral intake.
Unfortunately, only a few patients
have an easily correctable
cause of malnutrition.
2. Is the child safe to eat by
mouth?
Some children may not be
malnourished, but are referred
because of respiratory symptoms.
These children usually
have a neurologic disorder,
such as cerebral palsy or muscular
dystrophy. When they
eat or drink by mouth, food
enters not only the esophagus
and stomach, but also the
lungs (aspiration), and nasal
passages (naso-pharyngeal reflux).
Typically, these children
have been hospitalized
for pneumonia and may also
have recurrent "bronchitis",
"asthma" or "sinusitis".
The aspiration is usually
diagnosed with a test called a
"barium swallow" or
"modified barium swallow".
While the test may demonstrate
aspiration, the decision
to place a G-tube should not
be made on the basis of the
test alone, but rather based on
the child's symptoms. At this
point, I often consult with a
r e s p i r a t o r y s p e c i a l i s t
(pulmonologist) to determine
As a physician who specializes
in the care of children
with feeding difficulties and
other intestinal conditions, I
am often asked to determine
whether a gastrostomy (Gtube,
stomach feeding tube)
will help a child. Parents
often come to see me with
anxiety. Many parents view a
G-tube as a "necessary evil"
which may help their child
gain weight, but which may
also isolate their child from
other children, as well as
limit oral intake. In some
cases, I recommend a feeding
tube be placed promptly,
while in other cases I recommend
no tube at all. To help
me make this decision, I usually
ask these questions:
1. Is the child malnourished.
If so, why?
While special needs children
are all unique individuals
with different needs, they all
have one thing in common:
nutrition is essential for their
proper growth and development.
Malnourished children
are at risk for infections,
bone fractures, and anemia.
A malnourished child undergoing
a surgery has decreased
wound healing abilities
and may experience
more complications. In addition,
normal children who are
starved have slowed development;
therefore, while it is
not proven, refeeding malnourished
special needs children
may increase energy,
alertness, and possibly improve
development.
I usually determine malnutrition
by reviewing a child's
growth curve, seeing if the
weight is appropriate for
height, and examining them
carefully. Most blood tests
are normal except in very severe
malnutrition. Most of
the time, the baby's underlying
disease (cerebral palsy,
congenital heart disease, prematurity,
chronic lung disease,
etc.) is the only cause
of the poor growth. Babies
with cerebral palsy often
grow normally in the first six
months, but as they get older,
their suck and swallow may
not keep up with their needs,
and they stop gaining weight.
Babies with congenital heart
disease or lung disease feed
normally at the beginning of
a feeding, but tire out by the
end of the feeding. Babies
with behavioral feeding resistance
(oral aversion) tend
to turn away from the bottle
before it even gets put in the
mouth.
Sometimes, I find a treatable
cause of malnutrition,
such as pneumonia, urinary
infection, gastroesophageal
reflux with esophagitis, food
skin infections around the Gtube
site. Because of these
risks, I tend to recommend
feeding tubes only to these
children who I feel will really
benefit, and who will need
supplemental feeding for a
long time. I also make sure
other ways of improving nutrition
(such as thickening
feedings or increasing calories)
have been tried.
After discussing all these elements
with parents, I find
most parents are prepared for
having a feeding tube placed,
assuming their child really
needs it. If parents are not
ready, I recommend further
discussion between them, and
ask for a return clinic visit so
that I can answer any questions.
Since a G-tube involves
a major family commitment, I
feel it is important that a family
believe it is in their child's
best interest before I recommend
the surgery. q
P a g e 3 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
the severity of a patient's lung
disease.
3. Does the child need the
tube for medications?
Certain children with intractable
epilepsy or other conditions
may require a large
number of medications. If a
child with epilepsy starts having
seizures, he/she may be
unable to take their medications
by mouth. Lack of medications
in turn leads to worse
seizures. In these situations, a
G-tube may provide a useful
"safety valve" by which special
needs children can receive
their medications under just
about any conditions.
4. Do the benefits of a tube
outweigh the risks?
In the year 2000, the surgical
risks of placing a feeding tube
are relatively low. At Children's
the tube is placed under
general anesthesia, with a gastroenterologist
and surgeon
performing the procedure. The
risk of a serious surgical complication
of G-tube placement
(bowel perforation, bleeding)
is less than 1:100, and the procedure
takes under an hour.
Nevertheless, there are some
children (between 10-20%)
who may have problems after
the tube is placed. These problems
include vomiting and
Since a G-tube involves a
major family commitment,
I feel it is important
that a family believe it is
in their child's best interest
before I recommend
the surgery.
A Gastroenterologist’s Perspective ...
The MIC-Key button. Taken from the
Patient Information Guide from Medical
Innovations Corporation.
Commonly Asked Questions Regarding Tube Placement
Heidi Quinn M.S., RD, Feeding Team Coordinator, Children’s Hospital, Boston, MA
development. Your child’s
speech, occupational, or physical
therapist can develop an appropriate
oral-motor program for
your child.
What do I feed my child
through the G-tube?
There are many types of formulas
that can be given to your
child through the G-tube to meet
your child’s nutritional needs.
Your child’s nutritionist will
help you plan an appropriate diet
to meet the individual nutrient
and fluid needs of your child.
Vitamin and mineral supplements
may also be incorporated
into your child’s diet intake.
Can I put food through the Gtube?
Blenderized foods are available
as commercially prepared formulas
or can be made at home from
baby foods, juices, milk, baby
cereal or pureed foods. However,
preparation of home
blended formulas require careful
sanitary measures with regard to
foods and equipment used for
preparation, and monitoring by a
nutritionist for adequacy of calorie
and nutrient intake. Your
child's nutritionist can help you
develop the best diet for your
child. q
Parents have so many questions
and concerns as they consider
G-tube placement for their child.
It is a difficult decision often
filled with much anxiety. First,
let’s discuss some of the benefits
of G-tube placement, and
then address some of the nutrition
and feeding questions that
we commonly hear from parents.
What are the benefits of having
a G-tube placed?
Supplemental feedings via a Gtube
provide:
· Appropriate nutrients for
good growth and good health to
help fight infections.
· Fluid to meet hydration requirements
and ease constipation
difficulties.
· A safe feeding alternative
for children who cannot safely
feed orally.
· Help in reducing stress and
anxiety, for both caregivers and
child, due to long feedings with
often limited volume of intake
which are not adequate for
growth and good health.
· Reducing the number of
hours spent feeding allows more
time to do other things with your
child which are enjoyable and
less stressful.
What about using an NG-tube
instead of a G-tube for supplemental
feedings?
In general, NG-tube feedings are
recommended only as a short
term (i.e., 6-8 weeks) supplemental
feeding method. Prolonged
NG-tube feedings have been
found to contribute significantly
to the development of oral aversion
which can be a barrier to the
progression of oral feeding later
on.
Can my child still eat by mouth
if he/she has a G-tube?
If your child does not have safety
issues related to oral intake (i.e.,
Is not at risk for getting food or
fluid into their lungs), he/she can
and should continue to eat by
mouth. It is generally recommended
that they continue to eat
by mouth to promote both oralmotor
and feeding skill development
as well as to experience the
pleasurable social aspect of sharing
mealtimes. For some children,
safety considerations need
to be addressed, generally by a
speech-language pathologist or
occupational therapist who specializes
in oral-motor feeding issues.
Some children may be safe
with certain textures of food or
fluid, or very small volumes of
specific foods or fluids.
What if my child is not allowed
to eat by mouth?
There are many pleasurable activities
that you can do with your
child to help promote oral motor
K i d s w i t h T u b e s N e w s P a g e 4
A Dietitian’s Perspective ...
Commonly Asked Questions Regarding Tube Placement
Arden Hill, M.S., CCC-SLP, Children’s Hospital, Boston, MA
for an extensive period of
time. A G-tube is typically the
"tube of choice" for a child
who can tolerate feedings into
the stomach and is considered
the preferred tube for a
"partnership" with oral feedings
when the child is safe
and comfortable eating something
by mouth. The J-tube is
often recommended for the
child who cannot tolerate
feedings into the stomach (i.e.
vomiting with feedings and
compromising their health or
growth as a result).
Will my child need the tube
forever?
Some children need supplemental
tube feedings for fairly
short periods of time (i.e. 6
months), while others may
need them considerably
longer. The determining factors
are again safety and ability
to meet nutrition and hydration
with oral feedings.
How long does it take to
wean my child off of tube
feedings?
The time period greatly varies
from one child to the next. In
addition to safety and nutrition
factors, a child's medical
status plays a huge role. Often
there are interfering factors
such as gastroesophageal reflux,
necessary medical inter-
Why would my child be considered
for tube feedings?
If your child cannot safely
orally feed because food or liquid
is going into the trachea
and down into the lungs and/or
your child cannot meet their
nutrition or hydration needs
with oral feeding alone, tube
feeding might be considered.
How do I know how much
food or liquid going into the
lungs is too much (referred to
as aspiration)?
The truth is, no one knows.
This can be a very frustrating
answer to parents as well as
therapists. What we do know is
that food and liquid does not
enter the lungs in a child with a
normal swallow and that there
are many children who have
recurrent difficulties (i.e. upper
respiratory infections, pneumonias,
fevers, asthma, allergies)
when aspiration occurs.
How do I know what tube is
best for my child?
The decision regarding what
type of tube is right for your
child is really determined by
your core medical team. Typically
an NG-tube is considered
a short-term supplementation
system. That can have a negative
impact on a child's comfort
with their mouth and with oral
feeding experiences if it is in
P a g e 5 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
vention (i.e. surgery), ability
to integrate sensory information,
and common childhood
illnesses that can interfere
in a child's comfort
with oral feedings. When
there are interfering factors,
the weaning process can often
last a long time, even
years. In many children, as
these interfering factors become
less pervasive, the
process moves ahead at
what often feels like slowbut-
steady progress. The
ultimate goal of a speech
language pathologist is to
have every child feed orally,
but not at the expense of
safe oral feedings and/or
adequate nutrition and hydration.
Our job is to educate
and advise, but not to
make ultimate decisions
about your child's care.
Only your family, with the
support of your core medical
team, can make management
decisions for your
child. q
A Speech and Language Pathologist’s Perspective ...
May’s Story
mum requirement increased.
We took the data from the
log and charted it to illustrate
to the doctor our concern
about how her vomiting was
increasing in frequency. The
doctor felt the NG-tube should
only be a temporary measure,
and he started getting us ready
for the G-tube decision. After
6 weeks of the NG-tube at
home, we could never catch
up to that minimum required
amount by mouth. It was
clear that it was time.
Then May pulled a fast one
on us. She yanked out her
NG-tube, a common occurrence,
two days before her
scheduled surgery. The next
day, instead of getting the visiting
nurse over to drop the
tube back in, we thought we’d
see how well she’d bottlefeed.
She only had one day
before her surgery, so we
thought it wouldn’t hurt to try
it. Of course, she bottle-fed
very well that day. We gave
her regular strength formula,
which at 20 calories per ounce
was nice and watery and
thirst-quenching. She drank
almost all of her volume requirement
for the day. We
were ecstatic. We agonized
all day about whether or not to
go ahead with the G-tube.
Was this a fluke performance
or could she bottle-feed and
gain weight on her own?
We decided to cancel or at
least postpone the surgery. It
was a Sunday night, the surgery
was scheduled for 7 a.m.
the next morning, and the only
doctor on call was someone
we didn’t know. Talking to
him on the phone, we somehow
tried to explain the day’s
experiment, and how it made
us want to change our minds
about the surgery. The G-tube
sounded so invasive and scary.
I guess in the end we felt embarrassed,
and decided we
were just suffering from cold
feet. He talked to us patiently,
and finally convinced us to go
We resisted the idea of placing a
G-tube in our daughter, May, for
as long as we could. Due to
pregnancy complications, May
was born prematurely and small
for gestational age at 29 weeks
gestation and only 1 lb 7 oz. She
had no congenital problems, but
she struggled to survive with
respiratory distress, among other
typical preemie medical problems
which led to chronic lung
disease and failure to thrive. As
parents, we struggled with many
decisions over her care, but the
hardest one was the G-tube. It
seemed so foreign, invasive and
permanent, we hoped against
hope that we could come up with
a simple solution for a very complicated
problem.
In the NICU, May's doctor
occasionally floated the idea of
placing a G-tube. The nurses
disagreed with the idea and assured
us that she would bottlefeed
and grow better at home.
She languished an extra month
in the NICU while we tried to
get her to take all of her minimum
bottle feeds, but she always
needed to be supplemented by
the NG-tube. Finally, at over 4
months of age she came home
without the NG-tube and we had
expectations that she would soon
improve her bottle feeding.
The first six weeks at home
were distressing and exhausting.
May showed no improvement in
her ability to feed, and had slow
growth despite the 32-calorie
"rocket fuel" formula of breast
milk mixed with formula, polycose
and oil. We essentially carried
on her NICU schedule at
home: every four hours around
the clock we fed her, gave her
meds, took her temperature and
recorded her input and output in
a log. She had weekly hospital
visits for weight checks and
blood draws to monitor her electrolytes.
At six months of age,
and after six weeks of very slow
growth, she weighed in at only
seven pounds. We talked more
about the G-tube decision, yet
our Early Intervention therapist
was negative about it, calling
the G-tube "no picnic". We
had no contact with anyone in
the outside world who had
ever heard of a G-tube other
than our therapist and
medical professionals. We
agreed to use the NG-tube
again as an interim measure
before we had to face the Gtube
decision.
May had a terrible aversion
to anything going in her
mouth. We believe it came
partly from her history of a
long intubation and use of the
NG-tube, partly from having
to take the extremely bitter
tasting KCl (potassium chloride)
supplement by mouth,
and partly the thick formula
she had to drink. She would
only suck consistently on the
bottle while she slept. Awake,
it was always a struggle. We
didn’t know it then, but it was
an oral aversion that would
last for several years.
We started her back on the
NG-tube at home and she began
to pile on the weight. We
put her meds through the tube
so she didn’t have to taste
them. At the same time, however,
she began to develop
severe gastroesophageal reflux.
The vomiting went on
day and night. We would estimate
the volume vomited and
then re-feed that amount with
fresh formula. We tried to
continue the bottle and soon
began trying the cup. She
seemed to hate the bottle and
preferred the cup. The Early
Intervention therapist brought
us Haberman nipples, which
take less effort to suck. I
bought so many different nipples
and even ordered a case
of the same brand of nipples
she used in the hospital, always
hoping for a simple solution.
But she would not take
enough volume by mouth.
She became more and more
dependent on the NG-tube as
her weight increased and her
corresponding caloric mini-
K i d s w i t h T u b e s N e w s P a g e 6
ahead with the surgery. May was 7
½ months old, and weighed just
under 9 pounds.
May gained weight extremely
fast with the G-tube. In the first
month, she gained 2 pounds. After
a few months, she hit the growth
chart for the first time. Now using
a pump at night, we all got a good
night’s sleep every night, except
when she awoke to spit up. We
didn’t have to wake up every four
hours to feed her. The down sides
were hard. Vomiting increased, she
required a grueling daytime feeding
schedule because she could only
tolerate small boluses, and her oral
intake decreased to nothing at all by
mouth. But the medical implications
of weight gain and full nutrition
were obvious as she started
along the long road to physical recovery
and the race to developmentally
catch up with her peers. q
I bought so many different
nipples and even ordered a
case of the same brand of
nipples she used in the
hospital, always hoping
for a simple solution
I am doing lots of research on the feeding tube just to make sure this is what is going to help matthew. I want to do what is good for him and so far I am still going to see the surgeon for a consult next Thursday. Sorry it's not formated correctly but I don't have time to fix it.. lo. Maybe later. This happpened when I "Copied and Pasted" it....
Evaluating a Child for Gastrostomy Tube Placement
Athos Bousvaros, M.D., Dept. of Gastroenterology,
Children’s Hospital, Boston, MA
allergy, or incorrect preparation
of formula. In these
cases, treatment with the appropriate
formula or medication
may increase oral intake.
Unfortunately, only a few patients
have an easily correctable
cause of malnutrition.
2. Is the child safe to eat by
mouth?
Some children may not be
malnourished, but are referred
because of respiratory symptoms.
These children usually
have a neurologic disorder,
such as cerebral palsy or muscular
dystrophy. When they
eat or drink by mouth, food
enters not only the esophagus
and stomach, but also the
lungs (aspiration), and nasal
passages (naso-pharyngeal reflux).
Typically, these children
have been hospitalized
for pneumonia and may also
have recurrent "bronchitis",
"asthma" or "sinusitis".
The aspiration is usually
diagnosed with a test called a
"barium swallow" or
"modified barium swallow".
While the test may demonstrate
aspiration, the decision
to place a G-tube should not
be made on the basis of the
test alone, but rather based on
the child's symptoms. At this
point, I often consult with a
r e s p i r a t o r y s p e c i a l i s t
(pulmonologist) to determine
As a physician who specializes
in the care of children
with feeding difficulties and
other intestinal conditions, I
am often asked to determine
whether a gastrostomy (Gtube,
stomach feeding tube)
will help a child. Parents
often come to see me with
anxiety. Many parents view a
G-tube as a "necessary evil"
which may help their child
gain weight, but which may
also isolate their child from
other children, as well as
limit oral intake. In some
cases, I recommend a feeding
tube be placed promptly,
while in other cases I recommend
no tube at all. To help
me make this decision, I usually
ask these questions:
1. Is the child malnourished.
If so, why?
While special needs children
are all unique individuals
with different needs, they all
have one thing in common:
nutrition is essential for their
proper growth and development.
Malnourished children
are at risk for infections,
bone fractures, and anemia.
A malnourished child undergoing
a surgery has decreased
wound healing abilities
and may experience
more complications. In addition,
normal children who are
starved have slowed development;
therefore, while it is
not proven, refeeding malnourished
special needs children
may increase energy,
alertness, and possibly improve
development.
I usually determine malnutrition
by reviewing a child's
growth curve, seeing if the
weight is appropriate for
height, and examining them
carefully. Most blood tests
are normal except in very severe
malnutrition. Most of
the time, the baby's underlying
disease (cerebral palsy,
congenital heart disease, prematurity,
chronic lung disease,
etc.) is the only cause
of the poor growth. Babies
with cerebral palsy often
grow normally in the first six
months, but as they get older,
their suck and swallow may
not keep up with their needs,
and they stop gaining weight.
Babies with congenital heart
disease or lung disease feed
normally at the beginning of
a feeding, but tire out by the
end of the feeding. Babies
with behavioral feeding resistance
(oral aversion) tend
to turn away from the bottle
before it even gets put in the
mouth.
Sometimes, I find a treatable
cause of malnutrition,
such as pneumonia, urinary
infection, gastroesophageal
reflux with esophagitis, food
skin infections around the Gtube
site. Because of these
risks, I tend to recommend
feeding tubes only to these
children who I feel will really
benefit, and who will need
supplemental feeding for a
long time. I also make sure
other ways of improving nutrition
(such as thickening
feedings or increasing calories)
have been tried.
After discussing all these elements
with parents, I find
most parents are prepared for
having a feeding tube placed,
assuming their child really
needs it. If parents are not
ready, I recommend further
discussion between them, and
ask for a return clinic visit so
that I can answer any questions.
Since a G-tube involves
a major family commitment, I
feel it is important that a family
believe it is in their child's
best interest before I recommend
the surgery. q
P a g e 3 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
the severity of a patient's lung
disease.
3. Does the child need the
tube for medications?
Certain children with intractable
epilepsy or other conditions
may require a large
number of medications. If a
child with epilepsy starts having
seizures, he/she may be
unable to take their medications
by mouth. Lack of medications
in turn leads to worse
seizures. In these situations, a
G-tube may provide a useful
"safety valve" by which special
needs children can receive
their medications under just
about any conditions.
4. Do the benefits of a tube
outweigh the risks?
In the year 2000, the surgical
risks of placing a feeding tube
are relatively low. At Children's
the tube is placed under
general anesthesia, with a gastroenterologist
and surgeon
performing the procedure. The
risk of a serious surgical complication
of G-tube placement
(bowel perforation, bleeding)
is less than 1:100, and the procedure
takes under an hour.
Nevertheless, there are some
children (between 10-20%)
who may have problems after
the tube is placed. These problems
include vomiting and
Since a G-tube involves a
major family commitment,
I feel it is important
that a family believe it is
in their child's best interest
before I recommend
the surgery.
A Gastroenterologist’s Perspective ...
The MIC-Key button. Taken from the
Patient Information Guide from Medical
Innovations Corporation.
Commonly Asked Questions Regarding Tube Placement
Heidi Quinn M.S., RD, Feeding Team Coordinator, Children’s Hospital, Boston, MA
development. Your child’s
speech, occupational, or physical
therapist can develop an appropriate
oral-motor program for
your child.
What do I feed my child
through the G-tube?
There are many types of formulas
that can be given to your
child through the G-tube to meet
your child’s nutritional needs.
Your child’s nutritionist will
help you plan an appropriate diet
to meet the individual nutrient
and fluid needs of your child.
Vitamin and mineral supplements
may also be incorporated
into your child’s diet intake.
Can I put food through the Gtube?
Blenderized foods are available
as commercially prepared formulas
or can be made at home from
baby foods, juices, milk, baby
cereal or pureed foods. However,
preparation of home
blended formulas require careful
sanitary measures with regard to
foods and equipment used for
preparation, and monitoring by a
nutritionist for adequacy of calorie
and nutrient intake. Your
child's nutritionist can help you
develop the best diet for your
child. q
Parents have so many questions
and concerns as they consider
G-tube placement for their child.
It is a difficult decision often
filled with much anxiety. First,
let’s discuss some of the benefits
of G-tube placement, and
then address some of the nutrition
and feeding questions that
we commonly hear from parents.
What are the benefits of having
a G-tube placed?
Supplemental feedings via a Gtube
provide:
· Appropriate nutrients for
good growth and good health to
help fight infections.
· Fluid to meet hydration requirements
and ease constipation
difficulties.
· A safe feeding alternative
for children who cannot safely
feed orally.
· Help in reducing stress and
anxiety, for both caregivers and
child, due to long feedings with
often limited volume of intake
which are not adequate for
growth and good health.
· Reducing the number of
hours spent feeding allows more
time to do other things with your
child which are enjoyable and
less stressful.
What about using an NG-tube
instead of a G-tube for supplemental
feedings?
In general, NG-tube feedings are
recommended only as a short
term (i.e., 6-8 weeks) supplemental
feeding method. Prolonged
NG-tube feedings have been
found to contribute significantly
to the development of oral aversion
which can be a barrier to the
progression of oral feeding later
on.
Can my child still eat by mouth
if he/she has a G-tube?
If your child does not have safety
issues related to oral intake (i.e.,
Is not at risk for getting food or
fluid into their lungs), he/she can
and should continue to eat by
mouth. It is generally recommended
that they continue to eat
by mouth to promote both oralmotor
and feeding skill development
as well as to experience the
pleasurable social aspect of sharing
mealtimes. For some children,
safety considerations need
to be addressed, generally by a
speech-language pathologist or
occupational therapist who specializes
in oral-motor feeding issues.
Some children may be safe
with certain textures of food or
fluid, or very small volumes of
specific foods or fluids.
What if my child is not allowed
to eat by mouth?
There are many pleasurable activities
that you can do with your
child to help promote oral motor
K i d s w i t h T u b e s N e w s P a g e 4
A Dietitian’s Perspective ...
Commonly Asked Questions Regarding Tube Placement
Arden Hill, M.S., CCC-SLP, Children’s Hospital, Boston, MA
for an extensive period of
time. A G-tube is typically the
"tube of choice" for a child
who can tolerate feedings into
the stomach and is considered
the preferred tube for a
"partnership" with oral feedings
when the child is safe
and comfortable eating something
by mouth. The J-tube is
often recommended for the
child who cannot tolerate
feedings into the stomach (i.e.
vomiting with feedings and
compromising their health or
growth as a result).
Will my child need the tube
forever?
Some children need supplemental
tube feedings for fairly
short periods of time (i.e. 6
months), while others may
need them considerably
longer. The determining factors
are again safety and ability
to meet nutrition and hydration
with oral feedings.
How long does it take to
wean my child off of tube
feedings?
The time period greatly varies
from one child to the next. In
addition to safety and nutrition
factors, a child's medical
status plays a huge role. Often
there are interfering factors
such as gastroesophageal reflux,
necessary medical inter-
Why would my child be considered
for tube feedings?
If your child cannot safely
orally feed because food or liquid
is going into the trachea
and down into the lungs and/or
your child cannot meet their
nutrition or hydration needs
with oral feeding alone, tube
feeding might be considered.
How do I know how much
food or liquid going into the
lungs is too much (referred to
as aspiration)?
The truth is, no one knows.
This can be a very frustrating
answer to parents as well as
therapists. What we do know is
that food and liquid does not
enter the lungs in a child with a
normal swallow and that there
are many children who have
recurrent difficulties (i.e. upper
respiratory infections, pneumonias,
fevers, asthma, allergies)
when aspiration occurs.
How do I know what tube is
best for my child?
The decision regarding what
type of tube is right for your
child is really determined by
your core medical team. Typically
an NG-tube is considered
a short-term supplementation
system. That can have a negative
impact on a child's comfort
with their mouth and with oral
feeding experiences if it is in
P a g e 5 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
vention (i.e. surgery), ability
to integrate sensory information,
and common childhood
illnesses that can interfere
in a child's comfort
with oral feedings. When
there are interfering factors,
the weaning process can often
last a long time, even
years. In many children, as
these interfering factors become
less pervasive, the
process moves ahead at
what often feels like slowbut-
steady progress. The
ultimate goal of a speech
language pathologist is to
have every child feed orally,
but not at the expense of
safe oral feedings and/or
adequate nutrition and hydration.
Our job is to educate
and advise, but not to
make ultimate decisions
about your child's care.
Only your family, with the
support of your core medical
team, can make management
decisions for your
child. q
A Speech and Language Pathologist’s Perspective ...
May’s Story
mum requirement increased.
We took the data from the
log and charted it to illustrate
to the doctor our concern
about how her vomiting was
increasing in frequency. The
doctor felt the NG-tube should
only be a temporary measure,
and he started getting us ready
for the G-tube decision. After
6 weeks of the NG-tube at
home, we could never catch
up to that minimum required
amount by mouth. It was
clear that it was time.
Then May pulled a fast one
on us. She yanked out her
NG-tube, a common occurrence,
two days before her
scheduled surgery. The next
day, instead of getting the visiting
nurse over to drop the
tube back in, we thought we’d
see how well she’d bottlefeed.
She only had one day
before her surgery, so we
thought it wouldn’t hurt to try
it. Of course, she bottle-fed
very well that day. We gave
her regular strength formula,
which at 20 calories per ounce
was nice and watery and
thirst-quenching. She drank
almost all of her volume requirement
for the day. We
were ecstatic. We agonized
all day about whether or not to
go ahead with the G-tube.
Was this a fluke performance
or could she bottle-feed and
gain weight on her own?
We decided to cancel or at
least postpone the surgery. It
was a Sunday night, the surgery
was scheduled for 7 a.m.
the next morning, and the only
doctor on call was someone
we didn’t know. Talking to
him on the phone, we somehow
tried to explain the day’s
experiment, and how it made
us want to change our minds
about the surgery. The G-tube
sounded so invasive and scary.
I guess in the end we felt embarrassed,
and decided we
were just suffering from cold
feet. He talked to us patiently,
and finally convinced us to go
We resisted the idea of placing a
G-tube in our daughter, May, for
as long as we could. Due to
pregnancy complications, May
was born prematurely and small
for gestational age at 29 weeks
gestation and only 1 lb 7 oz. She
had no congenital problems, but
she struggled to survive with
respiratory distress, among other
typical preemie medical problems
which led to chronic lung
disease and failure to thrive. As
parents, we struggled with many
decisions over her care, but the
hardest one was the G-tube. It
seemed so foreign, invasive and
permanent, we hoped against
hope that we could come up with
a simple solution for a very complicated
problem.
In the NICU, May's doctor
occasionally floated the idea of
placing a G-tube. The nurses
disagreed with the idea and assured
us that she would bottlefeed
and grow better at home.
She languished an extra month
in the NICU while we tried to
get her to take all of her minimum
bottle feeds, but she always
needed to be supplemented by
the NG-tube. Finally, at over 4
months of age she came home
without the NG-tube and we had
expectations that she would soon
improve her bottle feeding.
The first six weeks at home
were distressing and exhausting.
May showed no improvement in
her ability to feed, and had slow
growth despite the 32-calorie
"rocket fuel" formula of breast
milk mixed with formula, polycose
and oil. We essentially carried
on her NICU schedule at
home: every four hours around
the clock we fed her, gave her
meds, took her temperature and
recorded her input and output in
a log. She had weekly hospital
visits for weight checks and
blood draws to monitor her electrolytes.
At six months of age,
and after six weeks of very slow
growth, she weighed in at only
seven pounds. We talked more
about the G-tube decision, yet
our Early Intervention therapist
was negative about it, calling
the G-tube "no picnic". We
had no contact with anyone in
the outside world who had
ever heard of a G-tube other
than our therapist and
medical professionals. We
agreed to use the NG-tube
again as an interim measure
before we had to face the Gtube
decision.
May had a terrible aversion
to anything going in her
mouth. We believe it came
partly from her history of a
long intubation and use of the
NG-tube, partly from having
to take the extremely bitter
tasting KCl (potassium chloride)
supplement by mouth,
and partly the thick formula
she had to drink. She would
only suck consistently on the
bottle while she slept. Awake,
it was always a struggle. We
didn’t know it then, but it was
an oral aversion that would
last for several years.
We started her back on the
NG-tube at home and she began
to pile on the weight. We
put her meds through the tube
so she didn’t have to taste
them. At the same time, however,
she began to develop
severe gastroesophageal reflux.
The vomiting went on
day and night. We would estimate
the volume vomited and
then re-feed that amount with
fresh formula. We tried to
continue the bottle and soon
began trying the cup. She
seemed to hate the bottle and
preferred the cup. The Early
Intervention therapist brought
us Haberman nipples, which
take less effort to suck. I
bought so many different nipples
and even ordered a case
of the same brand of nipples
she used in the hospital, always
hoping for a simple solution.
But she would not take
enough volume by mouth.
She became more and more
dependent on the NG-tube as
her weight increased and her
corresponding caloric mini-
K i d s w i t h T u b e s N e w s P a g e 6
ahead with the surgery. May was 7
½ months old, and weighed just
under 9 pounds.
May gained weight extremely
fast with the G-tube. In the first
month, she gained 2 pounds. After
a few months, she hit the growth
chart for the first time. Now using
a pump at night, we all got a good
night’s sleep every night, except
when she awoke to spit up. We
didn’t have to wake up every four
hours to feed her. The down sides
were hard. Vomiting increased, she
required a grueling daytime feeding
schedule because she could only
tolerate small boluses, and her oral
intake decreased to nothing at all by
mouth. But the medical implications
of weight gain and full nutrition
were obvious as she started
along the long road to physical recovery
and the race to developmentally
catch up with her peers. q
I bought so many different
nipples and even ordered a
case of the same brand of
nipples she used in the
hospital, always hoping
for a simple solution
Evaluating a Child for Gastrostomy Tube Placement
Athos Bousvaros, M.D., Dept. of Gastroenterology,
Children’s Hospital, Boston, MA
allergy, or incorrect preparation
of formula. In these
cases, treatment with the appropriate
formula or medication
may increase oral intake.
Unfortunately, only a few patients
have an easily correctable
cause of malnutrition.
2. Is the child safe to eat by
mouth?
Some children may not be
malnourished, but are referred
because of respiratory symptoms.
These children usually
have a neurologic disorder,
such as cerebral palsy or muscular
dystrophy. When they
eat or drink by mouth, food
enters not only the esophagus
and stomach, but also the
lungs (aspiration), and nasal
passages (naso-pharyngeal reflux).
Typically, these children
have been hospitalized
for pneumonia and may also
have recurrent "bronchitis",
"asthma" or "sinusitis".
The aspiration is usually
diagnosed with a test called a
"barium swallow" or
"modified barium swallow".
While the test may demonstrate
aspiration, the decision
to place a G-tube should not
be made on the basis of the
test alone, but rather based on
the child's symptoms. At this
point, I often consult with a
r e s p i r a t o r y s p e c i a l i s t
(pulmonologist) to determine
As a physician who specializes
in the care of children
with feeding difficulties and
other intestinal conditions, I
am often asked to determine
whether a gastrostomy (Gtube,
stomach feeding tube)
will help a child. Parents
often come to see me with
anxiety. Many parents view a
G-tube as a "necessary evil"
which may help their child
gain weight, but which may
also isolate their child from
other children, as well as
limit oral intake. In some
cases, I recommend a feeding
tube be placed promptly,
while in other cases I recommend
no tube at all. To help
me make this decision, I usually
ask these questions:
1. Is the child malnourished.
If so, why?
While special needs children
are all unique individuals
with different needs, they all
have one thing in common:
nutrition is essential for their
proper growth and development.
Malnourished children
are at risk for infections,
bone fractures, and anemia.
A malnourished child undergoing
a surgery has decreased
wound healing abilities
and may experience
more complications. In addition,
normal children who are
starved have slowed development;
therefore, while it is
not proven, refeeding malnourished
special needs children
may increase energy,
alertness, and possibly improve
development.
I usually determine malnutrition
by reviewing a child's
growth curve, seeing if the
weight is appropriate for
height, and examining them
carefully. Most blood tests
are normal except in very severe
malnutrition. Most of
the time, the baby's underlying
disease (cerebral palsy,
congenital heart disease, prematurity,
chronic lung disease,
etc.) is the only cause
of the poor growth. Babies
with cerebral palsy often
grow normally in the first six
months, but as they get older,
their suck and swallow may
not keep up with their needs,
and they stop gaining weight.
Babies with congenital heart
disease or lung disease feed
normally at the beginning of
a feeding, but tire out by the
end of the feeding. Babies
with behavioral feeding resistance
(oral aversion) tend
to turn away from the bottle
before it even gets put in the
mouth.
Sometimes, I find a treatable
cause of malnutrition,
such as pneumonia, urinary
infection, gastroesophageal
reflux with esophagitis, food
skin infections around the Gtube
site. Because of these
risks, I tend to recommend
feeding tubes only to these
children who I feel will really
benefit, and who will need
supplemental feeding for a
long time. I also make sure
other ways of improving nutrition
(such as thickening
feedings or increasing calories)
have been tried.
After discussing all these elements
with parents, I find
most parents are prepared for
having a feeding tube placed,
assuming their child really
needs it. If parents are not
ready, I recommend further
discussion between them, and
ask for a return clinic visit so
that I can answer any questions.
Since a G-tube involves
a major family commitment, I
feel it is important that a family
believe it is in their child's
best interest before I recommend
the surgery. q
P a g e 3 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
the severity of a patient's lung
disease.
3. Does the child need the
tube for medications?
Certain children with intractable
epilepsy or other conditions
may require a large
number of medications. If a
child with epilepsy starts having
seizures, he/she may be
unable to take their medications
by mouth. Lack of medications
in turn leads to worse
seizures. In these situations, a
G-tube may provide a useful
"safety valve" by which special
needs children can receive
their medications under just
about any conditions.
4. Do the benefits of a tube
outweigh the risks?
In the year 2000, the surgical
risks of placing a feeding tube
are relatively low. At Children's
the tube is placed under
general anesthesia, with a gastroenterologist
and surgeon
performing the procedure. The
risk of a serious surgical complication
of G-tube placement
(bowel perforation, bleeding)
is less than 1:100, and the procedure
takes under an hour.
Nevertheless, there are some
children (between 10-20%)
who may have problems after
the tube is placed. These problems
include vomiting and
Since a G-tube involves a
major family commitment,
I feel it is important
that a family believe it is
in their child's best interest
before I recommend
the surgery.
A Gastroenterologist’s Perspective ...
The MIC-Key button. Taken from the
Patient Information Guide from Medical
Innovations Corporation.
Commonly Asked Questions Regarding Tube Placement
Heidi Quinn M.S., RD, Feeding Team Coordinator, Children’s Hospital, Boston, MA
development. Your child’s
speech, occupational, or physical
therapist can develop an appropriate
oral-motor program for
your child.
What do I feed my child
through the G-tube?
There are many types of formulas
that can be given to your
child through the G-tube to meet
your child’s nutritional needs.
Your child’s nutritionist will
help you plan an appropriate diet
to meet the individual nutrient
and fluid needs of your child.
Vitamin and mineral supplements
may also be incorporated
into your child’s diet intake.
Can I put food through the Gtube?
Blenderized foods are available
as commercially prepared formulas
or can be made at home from
baby foods, juices, milk, baby
cereal or pureed foods. However,
preparation of home
blended formulas require careful
sanitary measures with regard to
foods and equipment used for
preparation, and monitoring by a
nutritionist for adequacy of calorie
and nutrient intake. Your
child's nutritionist can help you
develop the best diet for your
child. q
Parents have so many questions
and concerns as they consider
G-tube placement for their child.
It is a difficult decision often
filled with much anxiety. First,
let’s discuss some of the benefits
of G-tube placement, and
then address some of the nutrition
and feeding questions that
we commonly hear from parents.
What are the benefits of having
a G-tube placed?
Supplemental feedings via a Gtube
provide:
· Appropriate nutrients for
good growth and good health to
help fight infections.
· Fluid to meet hydration requirements
and ease constipation
difficulties.
· A safe feeding alternative
for children who cannot safely
feed orally.
· Help in reducing stress and
anxiety, for both caregivers and
child, due to long feedings with
often limited volume of intake
which are not adequate for
growth and good health.
· Reducing the number of
hours spent feeding allows more
time to do other things with your
child which are enjoyable and
less stressful.
What about using an NG-tube
instead of a G-tube for supplemental
feedings?
In general, NG-tube feedings are
recommended only as a short
term (i.e., 6-8 weeks) supplemental
feeding method. Prolonged
NG-tube feedings have been
found to contribute significantly
to the development of oral aversion
which can be a barrier to the
progression of oral feeding later
on.
Can my child still eat by mouth
if he/she has a G-tube?
If your child does not have safety
issues related to oral intake (i.e.,
Is not at risk for getting food or
fluid into their lungs), he/she can
and should continue to eat by
mouth. It is generally recommended
that they continue to eat
by mouth to promote both oralmotor
and feeding skill development
as well as to experience the
pleasurable social aspect of sharing
mealtimes. For some children,
safety considerations need
to be addressed, generally by a
speech-language pathologist or
occupational therapist who specializes
in oral-motor feeding issues.
Some children may be safe
with certain textures of food or
fluid, or very small volumes of
specific foods or fluids.
What if my child is not allowed
to eat by mouth?
There are many pleasurable activities
that you can do with your
child to help promote oral motor
K i d s w i t h T u b e s N e w s P a g e 4
A Dietitian’s Perspective ...
Commonly Asked Questions Regarding Tube Placement
Arden Hill, M.S., CCC-SLP, Children’s Hospital, Boston, MA
for an extensive period of
time. A G-tube is typically the
"tube of choice" for a child
who can tolerate feedings into
the stomach and is considered
the preferred tube for a
"partnership" with oral feedings
when the child is safe
and comfortable eating something
by mouth. The J-tube is
often recommended for the
child who cannot tolerate
feedings into the stomach (i.e.
vomiting with feedings and
compromising their health or
growth as a result).
Will my child need the tube
forever?
Some children need supplemental
tube feedings for fairly
short periods of time (i.e. 6
months), while others may
need them considerably
longer. The determining factors
are again safety and ability
to meet nutrition and hydration
with oral feedings.
How long does it take to
wean my child off of tube
feedings?
The time period greatly varies
from one child to the next. In
addition to safety and nutrition
factors, a child's medical
status plays a huge role. Often
there are interfering factors
such as gastroesophageal reflux,
necessary medical inter-
Why would my child be considered
for tube feedings?
If your child cannot safely
orally feed because food or liquid
is going into the trachea
and down into the lungs and/or
your child cannot meet their
nutrition or hydration needs
with oral feeding alone, tube
feeding might be considered.
How do I know how much
food or liquid going into the
lungs is too much (referred to
as aspiration)?
The truth is, no one knows.
This can be a very frustrating
answer to parents as well as
therapists. What we do know is
that food and liquid does not
enter the lungs in a child with a
normal swallow and that there
are many children who have
recurrent difficulties (i.e. upper
respiratory infections, pneumonias,
fevers, asthma, allergies)
when aspiration occurs.
How do I know what tube is
best for my child?
The decision regarding what
type of tube is right for your
child is really determined by
your core medical team. Typically
an NG-tube is considered
a short-term supplementation
system. That can have a negative
impact on a child's comfort
with their mouth and with oral
feeding experiences if it is in
P a g e 5 M a r c h 2 0 0 0 T h e D e c i s i o n t o P l a c e a F e e d i n g T u b e
vention (i.e. surgery), ability
to integrate sensory information,
and common childhood
illnesses that can interfere
in a child's comfort
with oral feedings. When
there are interfering factors,
the weaning process can often
last a long time, even
years. In many children, as
these interfering factors become
less pervasive, the
process moves ahead at
what often feels like slowbut-
steady progress. The
ultimate goal of a speech
language pathologist is to
have every child feed orally,
but not at the expense of
safe oral feedings and/or
adequate nutrition and hydration.
Our job is to educate
and advise, but not to
make ultimate decisions
about your child's care.
Only your family, with the
support of your core medical
team, can make management
decisions for your
child. q
A Speech and Language Pathologist’s Perspective ...
May’s Story
mum requirement increased.
We took the data from the
log and charted it to illustrate
to the doctor our concern
about how her vomiting was
increasing in frequency. The
doctor felt the NG-tube should
only be a temporary measure,
and he started getting us ready
for the G-tube decision. After
6 weeks of the NG-tube at
home, we could never catch
up to that minimum required
amount by mouth. It was
clear that it was time.
Then May pulled a fast one
on us. She yanked out her
NG-tube, a common occurrence,
two days before her
scheduled surgery. The next
day, instead of getting the visiting
nurse over to drop the
tube back in, we thought we’d
see how well she’d bottlefeed.
She only had one day
before her surgery, so we
thought it wouldn’t hurt to try
it. Of course, she bottle-fed
very well that day. We gave
her regular strength formula,
which at 20 calories per ounce
was nice and watery and
thirst-quenching. She drank
almost all of her volume requirement
for the day. We
were ecstatic. We agonized
all day about whether or not to
go ahead with the G-tube.
Was this a fluke performance
or could she bottle-feed and
gain weight on her own?
We decided to cancel or at
least postpone the surgery. It
was a Sunday night, the surgery
was scheduled for 7 a.m.
the next morning, and the only
doctor on call was someone
we didn’t know. Talking to
him on the phone, we somehow
tried to explain the day’s
experiment, and how it made
us want to change our minds
about the surgery. The G-tube
sounded so invasive and scary.
I guess in the end we felt embarrassed,
and decided we
were just suffering from cold
feet. He talked to us patiently,
and finally convinced us to go
We resisted the idea of placing a
G-tube in our daughter, May, for
as long as we could. Due to
pregnancy complications, May
was born prematurely and small
for gestational age at 29 weeks
gestation and only 1 lb 7 oz. She
had no congenital problems, but
she struggled to survive with
respiratory distress, among other
typical preemie medical problems
which led to chronic lung
disease and failure to thrive. As
parents, we struggled with many
decisions over her care, but the
hardest one was the G-tube. It
seemed so foreign, invasive and
permanent, we hoped against
hope that we could come up with
a simple solution for a very complicated
problem.
In the NICU, May's doctor
occasionally floated the idea of
placing a G-tube. The nurses
disagreed with the idea and assured
us that she would bottlefeed
and grow better at home.
She languished an extra month
in the NICU while we tried to
get her to take all of her minimum
bottle feeds, but she always
needed to be supplemented by
the NG-tube. Finally, at over 4
months of age she came home
without the NG-tube and we had
expectations that she would soon
improve her bottle feeding.
The first six weeks at home
were distressing and exhausting.
May showed no improvement in
her ability to feed, and had slow
growth despite the 32-calorie
"rocket fuel" formula of breast
milk mixed with formula, polycose
and oil. We essentially carried
on her NICU schedule at
home: every four hours around
the clock we fed her, gave her
meds, took her temperature and
recorded her input and output in
a log. She had weekly hospital
visits for weight checks and
blood draws to monitor her electrolytes.
At six months of age,
and after six weeks of very slow
growth, she weighed in at only
seven pounds. We talked more
about the G-tube decision, yet
our Early Intervention therapist
was negative about it, calling
the G-tube "no picnic". We
had no contact with anyone in
the outside world who had
ever heard of a G-tube other
than our therapist and
medical professionals. We
agreed to use the NG-tube
again as an interim measure
before we had to face the Gtube
decision.
May had a terrible aversion
to anything going in her
mouth. We believe it came
partly from her history of a
long intubation and use of the
NG-tube, partly from having
to take the extremely bitter
tasting KCl (potassium chloride)
supplement by mouth,
and partly the thick formula
she had to drink. She would
only suck consistently on the
bottle while she slept. Awake,
it was always a struggle. We
didn’t know it then, but it was
an oral aversion that would
last for several years.
We started her back on the
NG-tube at home and she began
to pile on the weight. We
put her meds through the tube
so she didn’t have to taste
them. At the same time, however,
she began to develop
severe gastroesophageal reflux.
The vomiting went on
day and night. We would estimate
the volume vomited and
then re-feed that amount with
fresh formula. We tried to
continue the bottle and soon
began trying the cup. She
seemed to hate the bottle and
preferred the cup. The Early
Intervention therapist brought
us Haberman nipples, which
take less effort to suck. I
bought so many different nipples
and even ordered a case
of the same brand of nipples
she used in the hospital, always
hoping for a simple solution.
But she would not take
enough volume by mouth.
She became more and more
dependent on the NG-tube as
her weight increased and her
corresponding caloric mini-
K i d s w i t h T u b e s N e w s P a g e 6
ahead with the surgery. May was 7
½ months old, and weighed just
under 9 pounds.
May gained weight extremely
fast with the G-tube. In the first
month, she gained 2 pounds. After
a few months, she hit the growth
chart for the first time. Now using
a pump at night, we all got a good
night’s sleep every night, except
when she awoke to spit up. We
didn’t have to wake up every four
hours to feed her. The down sides
were hard. Vomiting increased, she
required a grueling daytime feeding
schedule because she could only
tolerate small boluses, and her oral
intake decreased to nothing at all by
mouth. But the medical implications
of weight gain and full nutrition
were obvious as she started
along the long road to physical recovery
and the race to developmentally
catch up with her peers. q
I bought so many different
nipples and even ordered a
case of the same brand of
nipples she used in the
hospital, always hoping
for a simple solution
This was matthew first GREAT day after beating pneumonia again. He loves his Merry Muscle Jumper his Aunts bought him for christmas!
Remember to Stop Music from playing at the top of this page before you click to play a video!!!
Remember to Stop Music from playing at the top of this page before you click to play a video!!!
My friend came by today from Alabama. She has a little girl (she has custody of) with Schitzencephaly. She really needs prayers. Her daughter is going through a really rough time. Seizures are taking over and have affected terribly. By saying that she constantly screaming and is getting very hard to handle. She is weighs more than her mom and is very strong. I want to help her so bad, but I have my hands full with Matthew. I know she must be in a lot of pain. It's hard when you do everything you can to help your handicapped child... But it's really hard when the child can't control her emotions, anger or actions. It's very hard on her. I know it's hard on me and Matthew is the sweetest baby in the world. I get my blessing from his smiles and hugs but I don't know what I'd do if he screamed all the time.. even during the night. I just pray that things get better for her... It takes a lot of faith to keep going and a lot of prayers. All I can do is tell her I'll pray for her but sometimes that's not enough. People that really can't help that want to , like me CANT help because of Matthew's illnesses. People that CAN help simply WONT help. All I can tell her is LET JESUS TAKE THE WHEEL FRIEND. When you hear the tantrums and the screaming, find you a closet or a corner somewhere and ask Jesus to take the wheel.. pray loud enough that HE can hear you and maybe your little one too. I did'nt want to mention your names but you know who you are. My heart hurts with you. I just wanted to cry today when we were in the truck today. I can't understand why God puts things like this on us and I question him but I know there's got to be a reason. If the reason is only to teach me compassion, love, patience and understanding, I guess that will be good enough for me. It just means God is getting you ready for Bigger and Better things. It's all going to be alright. So just hang in there. Always remember I'm here for you. I may not can do much but I can pray for you.
Love Charlotte and Matthew
Love Charlotte and Matthew
This is Josh, "Hamming" it up!
Merry Christmas! Here's Mary, Big Matt and Little Matt. Now you know who matt Looks like!!
My son, Josh the US Marine got a 10 day leave for Christmas. We got up early to open presents. Matthew wasn't in the mood to get up early. As you can tell by the pictures. We all kissed him awake. (Josh Left and Uncle Korey, Right Pic)
Merry Christmas! Here's Mary, Big Matt and Little Matt. Now you know who matt Looks like!!
My son, Josh the US Marine got a 10 day leave for Christmas. We got up early to open presents. Matthew wasn't in the mood to get up early. As you can tell by the pictures. We all kissed him awake. (Josh Left and Uncle Korey, Right Pic)
Funny how Matthew can make even a MARINE M E l t! I got my two top priority wish for Christmas. Another Christmas with Matthew and 10 days with my son before he goes to Fallushia.. Yes. I said Fallushia. I know very little about the war in Iraq but if you asked me where I would NOT want him to go it would be Fallushia! You don't have to know much about the war to know that that's the worst place he could be sent. I don't even want to get into it. I know he is being well trained. He's being trained to fight like a devil dog and I didn't understand it at first but I do now. I want him to be just as mean and as sly as the devil when he gets there. That's the only way He'll get to come back home. His specialty is Machine Gunner. He's a sharp shooter. They are learning house to house combat when he gets back... I did a little research and it all boils down to this. Statistically, Matthew has a better chance of living longer than Josh does when he goes to Fallushia and that's not good. Not good at all. Now I have two things to worry about. I do know that if anything happens to him that he will be doing what he's always wanted to do. (Crazy though he may be) I still support him and all the military in and around Iraq. All we can do is pray and pray. I'm going to be a total wreck when it's his time to go to Fallushia. I'm not getting any younger and not sure how much more stress my heart can take.
Matthew is lots better. He's still stuffy but no fever in two days. Seizures are still bad but not as bad.. He's not haveing them during the day, just at nap time and at bed time. I'm glad he's better. I'm still going to see about the feeding tube next week. Have not changed my mind.
Here are more pictures.. I must have been a good girl.. I got lots of stuff this year! Matthew got his merry muscles jumper and a treadmill to go with it. I'll have a video of him in the jumper to share with you all soon!
Charlotte
As I was cleaning yesterday, I accidentally kicked Matthews ceramic angel and the wing broke off. It stays by his baby bed. The wing shattered into a million pieces. I picked it up and put in the the garbage can and never gave it another thought.
Later whenever I was cleaning the kitchen, I dumped out some coffee grinds into the garbage can on top of the broken angel. Never gave it another thought.
That evening I was going to get the garbage ready to go out and when I looked into the can the Angel was looking right at me. Her face was covered with coffee grounds. That's when it hit me. I tearfully took her out of the garbage and rinsed off the grounds. I tried to glue back the pieces of the wings but it was just too many pieces. I took the broken angel and put her back in her place besides Matthew's baby bed. Back were she belongs. I couldn't believe that I was going to throw it away, just because the wing was broken. It is still beautiful and still just as good as it was before except that now it is a "special" angel. Just like my Matthew. She still had the same look on her face.
She looks like she is watching something or possible, she' watching Matthew. Nothing else was wrong. Just a broken wing. I don't care what people may think when they see the broken angel. Some may wonder what happened to her. Why don't I just throw it away or put it away somewhere.. Some may wonder why I want to hang on to it or why don't I just go and replace it with one that's not broken. To me, this Angel is now priceless and I wouldn't trade it for anything. It may not be perfect in their eyes but it's more than perfect to me. I wish everyone could feel what I feel in my heart now when I look at it. If you never had an angel with a broken wing, then you could never know how precious they are.Charlotte
Matthew A. Sanderson’s Living Will (Ganny Charlotte’s Version)
Warning, Death mentioned-A Lot. Might be more than you can handle But I want this said and I'm not changing my mind this time.
Incase something should happen to me. I want to MAKE SURE that Matthew is taken care of. Especially since he will be getting a feeding tube. So here it is. If this situation comes up and I'm deceased I hope that anyone reading this will fight for my baby's life and let them know about this will. If you didn't have anything to do with him while he was "not sick" then you shouldn't expect to have any say so in this matter. Sorry I have to be so harsh but I want what's best for Matthew. There is a signed copy of this will with in my home.
NOTE:
When I say "The Way he was before" that can only be determined by the persons mentioned at the bottom of this Will. These are the only people that know Matthew besides me and know all about him.. The doctors do not know how Matthew was before. You can look at my videos on this blog and see "the way he was before".
To Matthew A. Sanderson's family, doctors, hospitals, and all those concerned with his care: I Charlotte Kappler , Legal Guardian, being of sound mind willfully and voluntarily make this declaration to be followed if I become incompetent or If I die before my Grandson Matthew Sanderson.This declaration reflects my firm and settled commitment to refuse life-sustaining treatment under the circumstances indicated below. Notice I said UNDER THE CIRCUMSTANCES.Being legal gaurdian, grandmother, mother, nurse and caretaker I deserve my requests met to the fullest. I took care of him and devoted my full attention to him while I was on this earth. I expect my wishes to be met. No one other than I or the one's I have mentioned in the will shall have any say so in Matthew's care.FIRST, under NO conditions is ANYONE to remove his feeding tube unless you are just changing it out. I don't care if you know for a fact that he's brain dead, I do not want him starved to death and that's what you'll be doing so DON'T Do it..!!!! You can feed a person all you want, if they are going to die, they will die with the feeding tube. If you remove his tube and he is still alive you will be a murderer.I expect the above mentioned parties to regard themselves as legally and morally bound to act in accordance with my wishes, free, thereby, of any legal liability for having followed my directions.1. I direct Matthew's attending physician to withhold or withdraw life-sustaining treatment that serves only to prolong the process of his dying, if he should be in a incurable and have no chance of recovery. His mental and physical state should not be taken into consideration unless one or the other is causing the death. To make myself Clear on#1 I don't consider Matthew to be "dying" just because his brain is different. Just because he can’t walk, talk or crawl doesn’t mean he doesn’t get the same treatment as a "normal" child. If life sustaining treatment can get him back to the way his was before then I WANT life sustaining treatment. If he has a siezure and has cardiac arrest, I WANT him reseccitated. If he's dying and there is no hope of being like he was before, then you may withhold life sustaining treatment. (Don't touch the tube!) But if he has any chance of being like he was before I want everything done for him possibe. TREAT HIM AS IF HE WAS YOUR NORMAL CHILD, NOT AS A CHILD WITH MULTIPLE BRAIN MALFORMATIONS..2. I direct that treatment be limited to measures to keep him comfortable and to relieve pain, including any pain that might occur by withholding or withdrawing life- sustaining treatment. (not his tube!) That’s if he has no chance of surviving and being like he was before.
If he has pneumonia or cardiac arrest and requires a heart lung machine, then YES I want him to have it for at least 3 days. After three days we should know if it's time to let him go or not. That decision will be made by only the ones listed below.
If Matthew passes and I have passed before him, you should find great comfort in knowing that once again, he is being well taken care of by me in Heaven.
No Chaos at his funeral. Here's what I want.
No flowers at his funeral. I want all balloons of many colors released at the gravesite. Any donations can go directly to the funeral home to pay for the funeral, the rest will be given to
The Songs of Love Organization. No singers at funeral, just tapes or Cd's with original singers. Songs for Funeral, Angels Among Us, (Alabama)Angels in Waiting (Martina McBride) Because You Loved Me (Celine Dionne) I want my poems "Angel Wings" Read and the one called Jesus, Matthew and Me". They are all on my blog somewhere. At the gravesite I want someone to sing "Go Rest High on That Mountain" (Vince Gill)
My final and most important wish that I have is that he be buried right next to me. If it's possible, I would like him buried WITH me. Our fleshly bodies belong together in the grave as they did on earth even though our souls will be together in heaven. It would make a lot of people feel better knowing that we were together again.
Other Instruction:4. I designate, John Kappler, My Husband ,Legal Guardian as his surrogate to make medical treatment decisions for him in a manner consistent with this declaration, if I should be incompetent or be deceased and Matthew is in terminal condition or in a state of permanent unconsciousness.
If the person I have named above is unable to act on my behalf, I authorize the following person to do so: Mary T. Sanderson, His mother, and Mary R. Pugh, his Great Grandmother, Melinda Patton, Grace Shonts. This Living Will Declaration expresses my wishes, and the fact that I may have executed a form specified by state law shall not be construed as limiting or contradicting this Declaration, which is an expression of my constitutional rights.I make this declaration on this the 21st day of December,2006
Charlotte A.Kappler, Legal Guarding and Grandmother of Matthew A. Sanderson______________________________ _____________________________ Declarant Address______________________________ _____________________________ Witness Address_____________________________ ______________________________ Witness Address
Warning, Death mentioned-A Lot. Might be more than you can handle But I want this said and I'm not changing my mind this time.
Incase something should happen to me. I want to MAKE SURE that Matthew is taken care of. Especially since he will be getting a feeding tube. So here it is. If this situation comes up and I'm deceased I hope that anyone reading this will fight for my baby's life and let them know about this will. If you didn't have anything to do with him while he was "not sick" then you shouldn't expect to have any say so in this matter. Sorry I have to be so harsh but I want what's best for Matthew. There is a signed copy of this will with in my home.
NOTE:
When I say "The Way he was before" that can only be determined by the persons mentioned at the bottom of this Will. These are the only people that know Matthew besides me and know all about him.. The doctors do not know how Matthew was before. You can look at my videos on this blog and see "the way he was before".
To Matthew A. Sanderson's family, doctors, hospitals, and all those concerned with his care: I Charlotte Kappler , Legal Guardian, being of sound mind willfully and voluntarily make this declaration to be followed if I become incompetent or If I die before my Grandson Matthew Sanderson.This declaration reflects my firm and settled commitment to refuse life-sustaining treatment under the circumstances indicated below. Notice I said UNDER THE CIRCUMSTANCES.Being legal gaurdian, grandmother, mother, nurse and caretaker I deserve my requests met to the fullest. I took care of him and devoted my full attention to him while I was on this earth. I expect my wishes to be met. No one other than I or the one's I have mentioned in the will shall have any say so in Matthew's care.FIRST, under NO conditions is ANYONE to remove his feeding tube unless you are just changing it out. I don't care if you know for a fact that he's brain dead, I do not want him starved to death and that's what you'll be doing so DON'T Do it..!!!! You can feed a person all you want, if they are going to die, they will die with the feeding tube. If you remove his tube and he is still alive you will be a murderer.I expect the above mentioned parties to regard themselves as legally and morally bound to act in accordance with my wishes, free, thereby, of any legal liability for having followed my directions.1. I direct Matthew's attending physician to withhold or withdraw life-sustaining treatment that serves only to prolong the process of his dying, if he should be in a incurable and have no chance of recovery. His mental and physical state should not be taken into consideration unless one or the other is causing the death. To make myself Clear on#1 I don't consider Matthew to be "dying" just because his brain is different. Just because he can’t walk, talk or crawl doesn’t mean he doesn’t get the same treatment as a "normal" child. If life sustaining treatment can get him back to the way his was before then I WANT life sustaining treatment. If he has a siezure and has cardiac arrest, I WANT him reseccitated. If he's dying and there is no hope of being like he was before, then you may withhold life sustaining treatment. (Don't touch the tube!) But if he has any chance of being like he was before I want everything done for him possibe. TREAT HIM AS IF HE WAS YOUR NORMAL CHILD, NOT AS A CHILD WITH MULTIPLE BRAIN MALFORMATIONS..2. I direct that treatment be limited to measures to keep him comfortable and to relieve pain, including any pain that might occur by withholding or withdrawing life- sustaining treatment. (not his tube!) That’s if he has no chance of surviving and being like he was before.
If he has pneumonia or cardiac arrest and requires a heart lung machine, then YES I want him to have it for at least 3 days. After three days we should know if it's time to let him go or not. That decision will be made by only the ones listed below.
If Matthew passes and I have passed before him, you should find great comfort in knowing that once again, he is being well taken care of by me in Heaven.
No Chaos at his funeral. Here's what I want.
No flowers at his funeral. I want all balloons of many colors released at the gravesite. Any donations can go directly to the funeral home to pay for the funeral, the rest will be given to
The Songs of Love Organization. No singers at funeral, just tapes or Cd's with original singers. Songs for Funeral, Angels Among Us, (Alabama)Angels in Waiting (Martina McBride) Because You Loved Me (Celine Dionne) I want my poems "Angel Wings" Read and the one called Jesus, Matthew and Me". They are all on my blog somewhere. At the gravesite I want someone to sing "Go Rest High on That Mountain" (Vince Gill)
My final and most important wish that I have is that he be buried right next to me. If it's possible, I would like him buried WITH me. Our fleshly bodies belong together in the grave as they did on earth even though our souls will be together in heaven. It would make a lot of people feel better knowing that we were together again.
Other Instruction:4. I designate, John Kappler, My Husband ,Legal Guardian as his surrogate to make medical treatment decisions for him in a manner consistent with this declaration, if I should be incompetent or be deceased and Matthew is in terminal condition or in a state of permanent unconsciousness.
If the person I have named above is unable to act on my behalf, I authorize the following person to do so: Mary T. Sanderson, His mother, and Mary R. Pugh, his Great Grandmother, Melinda Patton, Grace Shonts. This Living Will Declaration expresses my wishes, and the fact that I may have executed a form specified by state law shall not be construed as limiting or contradicting this Declaration, which is an expression of my constitutional rights.I make this declaration on this the 21st day of December,2006
Charlotte A.Kappler, Legal Guarding and Grandmother of Matthew A. Sanderson______________________________ _____________________________ Declarant Address______________________________ _____________________________ Witness Address_____________________________ ______________________________ Witness Address
Matthew started getting more "chipper" yesterday. Today he was cutting up in his walker and dancing. He was jumping and knocking all that gunk loose in his lungs and was coughing. It was very good for him. I didn't have much trouble getting him to eat or drink. No fever today either!
He is such a little soldier! He looked so pitiful the last few days. He didn't want to do anything. It's scary seeing him like that. I know my mom can't stand to see him just laying around because she knows I keep him busy most of the time.
I got a lot of email regarding the feeding tube. I have decided to go with it. I don't want to be the cause of him getting another aspiration pneumonia. I have heard a LOT of good things about it. I have not heard any "bad" things. It all sums up to one thing. The feeding tube saves little lives everyday. It doesn't have to be permanent. Just to use on his "bad" days. I can handle that. I have set up an appointment for next year to see a lung doctor and then we go from there.
I feel really dumb right now. I alway check on Matthew every hour or even sooner if he's asleep and I'm on the computer and can't see him. I just bought a lot of double a batteries and cleaned up all his toys and they are like brand new again. I couldn't see buying more toys when he doesn't even play with half the ones he has. I also put batteries in a crystal that an internet friend sent him. You set the crystal on a stand and it light up in the color BLUE. It's right above his head and the blue is reflecting on him. I got up after I typed the first paragraph of this post to check on him an my heart jumped out of my chest! He was BLUE! I jerked him up and guess what? He was fine. It was the blue from the crystal. lol It wasn't funny at the time but it is now.
It's not totally dark in the room. I probably would have caught it if was totally dark and the crystal was the only thing that was on but I didn't . lol...
Now the "not so funny part" is that when I check on him I stand there and wait for his chest to rise and fall... not once but twice. It's a habit. I even do it during the night. If I oversleep, It's really scary. I am a member of lots of yahoo groups that have kids with the same stuff matthew has. Most of the kids pass when they are in the hospital but some just pass during the night for no reason other than their brain malformation. Yesterday, I am taught another word that I care not to but I had to. I had to google it.
The word is OPISTHOTONOS
I did a little research on Opisthotonos because I was wondering what causes it. It says it is a sign of irritation of the membranes surrounding the brain and spinal cord (meninges). It may also occur as a sign of depressed brain function or injury to the nervous system. It also comes with some very rigid seizures (arching backwards). What I was wondering was if a sickness can cause this or a brain malformation? Matthew has so many brain malformations and so many seizures I was just concerned that he could get it. He certainly does have areas of his brain that are depressed meaning they dont work... I didn't know that a brain that has depressed function could get worse? Matthew's diagnosis is static encephalopathy meaning it stays the same, doesn't get worse but this is different. Anyway, I have enough to worry about but I thought I should at least check it out.
I know that He's in God's hands but I also know that he's not going to live very long with all the odds against him. If he did live until he was 40 or 50, what kind of life would that be? If you are a christian like me and believe in eternal life in Heaven, then you would know that a long life is not the answer for him. A Miracle would be nice though.
Charlotte
He is such a little soldier! He looked so pitiful the last few days. He didn't want to do anything. It's scary seeing him like that. I know my mom can't stand to see him just laying around because she knows I keep him busy most of the time.
I got a lot of email regarding the feeding tube. I have decided to go with it. I don't want to be the cause of him getting another aspiration pneumonia. I have heard a LOT of good things about it. I have not heard any "bad" things. It all sums up to one thing. The feeding tube saves little lives everyday. It doesn't have to be permanent. Just to use on his "bad" days. I can handle that. I have set up an appointment for next year to see a lung doctor and then we go from there.
I feel really dumb right now. I alway check on Matthew every hour or even sooner if he's asleep and I'm on the computer and can't see him. I just bought a lot of double a batteries and cleaned up all his toys and they are like brand new again. I couldn't see buying more toys when he doesn't even play with half the ones he has. I also put batteries in a crystal that an internet friend sent him. You set the crystal on a stand and it light up in the color BLUE. It's right above his head and the blue is reflecting on him. I got up after I typed the first paragraph of this post to check on him an my heart jumped out of my chest! He was BLUE! I jerked him up and guess what? He was fine. It was the blue from the crystal. lol It wasn't funny at the time but it is now.
It's not totally dark in the room. I probably would have caught it if was totally dark and the crystal was the only thing that was on but I didn't . lol...
Now the "not so funny part" is that when I check on him I stand there and wait for his chest to rise and fall... not once but twice. It's a habit. I even do it during the night. If I oversleep, It's really scary. I am a member of lots of yahoo groups that have kids with the same stuff matthew has. Most of the kids pass when they are in the hospital but some just pass during the night for no reason other than their brain malformation. Yesterday, I am taught another word that I care not to but I had to. I had to google it.
The word is OPISTHOTONOS
I did a little research on Opisthotonos because I was wondering what causes it. It says it is a sign of irritation of the membranes surrounding the brain and spinal cord (meninges). It may also occur as a sign of depressed brain function or injury to the nervous system. It also comes with some very rigid seizures (arching backwards). What I was wondering was if a sickness can cause this or a brain malformation? Matthew has so many brain malformations and so many seizures I was just concerned that he could get it. He certainly does have areas of his brain that are depressed meaning they dont work... I didn't know that a brain that has depressed function could get worse? Matthew's diagnosis is static encephalopathy meaning it stays the same, doesn't get worse but this is different. Anyway, I have enough to worry about but I thought I should at least check it out.
I know that He's in God's hands but I also know that he's not going to live very long with all the odds against him. If he did live until he was 40 or 50, what kind of life would that be? If you are a christian like me and believe in eternal life in Heaven, then you would know that a long life is not the answer for him. A Miracle would be nice though.
Charlotte
Matthew was diagnosed with the croup last friday, today after an xray they said its pneumonia. What's strange is that is in the same spot on his right lung as last time.
Matthew still sucks a bottle and eats a little with the spoon but with these seizures lately it's gotten harder to get the food down him without him choking. When he's not having seizures he can eat and drink great. I asked the doctor since the pneumonia was in the same place on the same side, could that be from choking on his bottle or food and she said most definately. Now when I try to give him his meds, it's an all day chore sometimes and most of the time, especially when he had the croup, he is choking on the robitussen, benydryl and motrin that I have to give him with a dropper.
He's not underweight and I guess a tube could be a good thing but I just HATE to have to give in the what we were told he would need right after he was born. .. a feeding tube. I fought the battle for close to four years to keep him off of the tube but I don't want to kill him everytime I give him something to eat.... He's only had pneumonia twice. He had a swallow study done a few years ago and he could probably pass another one but it would depend on how many seizures he's had that day.. they affect his swallowing.. I've heard some good things about tubes and bad things. I want to still be able to put him in the whirlpool EVERY single morning and take him swimming .. is that possible?? I just hate the thought of an opening on his little body.
I guess some of you know what I mean. Anyway I am going to make an appt. for next year to get the ball rolling.... I just hate to say I lost this battle and the doctors were not right ... but I guess I will have too...
Charlotte and Matthew
PS.
He's at home with me and doing fine. He is getting better slowly.
Here's a few things I found about Aspiration Pneumonia. Now what is the BEST FEEDING TUBE ?? I gotta lot of googling to do.
ASPIRATION PNEUMONIA
GENERAL INFORMATION:
What is aspiration pneumonia? Aspiration (as-pi-RAY-shun) pneumonia (noo-MOH-nyah) happens when a liquid or an object is inhaled into the lungs. A common cause of aspiration pneumonia is inhaling (aspirating) acid or vomit from the stomach. Having food, drink, or saliva (spit) from your mouth go into your lungs can also cause aspiration pneumonia. When these things go into the lungs, it can damage (hurt) the lungs, or cause a blockage. This damage or blockage may cause swelling and fluid in the lungs. It can also cause an infection (in-FECK-shun) in the lungs, such as bacterial (bak-TEE-ree-al) pneumonia.
Who is most at risk for getting aspiration pneumonia?
Having trouble swallowing or coughing increases your risk of getting aspiration pneumonia. Your risk of getting pneumonia and having swallowing problems increases as you age. Many health problems that affect muscles or nerves can increase the risk of aspiration pneumonia. Examples include a stroke, a head injury, seizures, multiple sclerosis, or Parkinson disease. Problems with your esophagus (ee-SOF-ah-gus) can also increase your risk of aspiration pneumonia. Your esophagus, or "food pipe," carries food from your mouth to your stomach. People who are unconscious because of anesthesia (an-es-THEE-zah) or a medical problem may choke or aspirate. Becoming less alert due to certain drugs or alcohol, or overdosing on drugs increases your chance of having aspiration pneumonia.
You may be more likely to get pneumonia if you have a lung disease such as asthma or emphysema (em-fi-SEE-mah). You are more likely to get pneumonia and other lung infections if you smoke. Having a long-term medical condition (such as heart failure) may also increase your risk of getting pneumonia. If you have to stay in bed for a long time, such as after an injury or surgery, you have a greater chance of getting pneumonia. You may be more likely to get pneumonia if you have a long-term drinking problem (alcoholism), or if you have a poor diet.
What are the signs and symptoms of swallowing problems? It may be hard to tell if you or someone you care for has a problem with swallowing. Tell a caregiver if you notice the following signs of a swallowing problem.
Drooling, or having food or fluid leak out of the nose.
Having food left over in the mouth after swallowing.
Feeling pain when swallowing, or feeling like something is stuck in the throat.
Having to make unusual movements of the head or neck when swallowing.
Coughing or choking a lot when eating or drinking.
A wet or gurgle-like voice after swallowing.
What are the signs and symptoms of aspiration pneumonia? Sometimes it may take a few days for symptoms of aspiration pneumonia to begin. The signs and symptoms of aspiration pneumonia can get worse very quickly. The signs and symptoms that you have may depend on what you inhaled into your lungs, and how much was inhaled. Common signs and symptoms may include one or more of the following:
Frequent coughing. Your cough may may bring up bad-smelling mucus from your lungs. This phlegm (flem) may have pus or streaks of blood in it. You may also cough up frothy (bubbly) fluid from your lungs.
Shortness of breath or noisy breathing. Your heartbeat or breathing (while resting) may seem much faster than normal.
Fever or chills. You may sweat a lot.
Chest pain when you cough or take a deep breath.
Trouble swallowing, or you feel like something is stuck in your throat.
Feeling dizzy, faint, or having new trouble thinking (confusion). You may feel upset or anxious.
Feeling like you cannot get enough air. Your skin, lips, or fingernails may turn dusky or blue.
How is aspiration pneumonia diagnosed? Your caregiver will examine you and listen to your heart and lungs through a stethoscope (STETH-oh-skohp). You may need tests such as blood tests or a chest x-ray. You may need different tests to find out more about how well you swallow. These tests may include swallowing studies, or special tests of your throat or esophagus. Special x-ray pictures, such as a barium swallow, may be needed to see what happens when you swallow. You may need an endoscopy (en-DOS-koh-pee) to find or treat a swallowing problem. During an endoscopy, your caregiver uses a small tube with a light on the end (called a scope). The scope lets your caregiver see your throat, esophagus, and stomach.
How is aspiration pneumonia treated? You may need to stay in the hospital to get better from aspiration pneumonia. You may need oxygen and special medicines to help your lungs. You may need medicine to help reduce the acid in your stomach or to help food move through your stomach faster. You may need antibiotics (an-ti-bi-AH-tiks) to prevent or treat an infection caused by bacteria (bak-TEE-ree-ah). You may need a machine to help you breathe. If you inhaled something solid, you may need a bronchoscopy (brong-KOS-ke-pee) to remove it. This procedure uses a small, flexible scope that is passed through your mouth and into your lungs. You may need special caregivers to help decrease your chance of inhaling something into your lungs again. A speech and language pathologist (pah-THOL-oh-jist) or an occupational (ok-u-PAY-shun-al) therapist may help find and treat swallowing problems. A dietitian (deye-e-TISH-an) can help you plan easy-to-swallow meals to decrease your risk of choking.
Risks: Aspiration pneumonia can be serious, even life threatening. You may get a lung infection that may spread to the bloodstream or other areas of your body. You may get other life threatening problems such as respiratory failure (when you cannot breathe without the help of a machine). Pneumonia is even more dangerous for people over the age of 50, and people with immune system or other health problems. It may take a long time to get better after having aspiration pneumonia. The sooner your pneumonia is treated, the less chance you have of problems.
I had someone say they couldn't find the Holding YOU video so I moved it up here. So here it is.
Charlotte
Charlotte
Please click on the link above and vote on Matthews Christmas pic I submitted to a local television station. I sure could use a new camera.... It's the cutest pic on there anyway!
Charlotte
http://www.wlbt.com/Global/link.asp?L=159468&nav=1L7tbw0h
Charlotte
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Wahabi Shriners' Christmas Party 12-10-05
The great people at Wahabi Shriners Temple in Jackson, invited us to their annual christmas party. The do lots for the kids that go to Shriner's Hospital. They pay for gas and a room every single time we have a doctors appointment in Shreveport. I don't know how we would have made each and every appointment without them! Shriners Hospital in Shreveport is a great hospital. Anyway here are some pics!
I made up this Christmas Video of pictures of all of our friends we've met since Matthew was born. Most are from the many support groups that I belong too. Some are from right here in Vicksburg. This is all we want for Christmas. Parents of Special Needs Childrens always want just one thing for Christmas. For me it's a day without seizures. I snuck a picture of my USMC Son who BETTER come home for Christmas since he couldn't make it Thanksgiving.
Charlotte
Charlotte
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