"63 years old and I'm buying baby food again..... "
that ^^ is in response to my request to my husband via e-
mail this morning that when he goes to grocery to put
<baby
food on the list for ME>.
I am supposed to be eating 1500-1700 daily calories.
I average under 1000..................
BAD! but when you cannot eat, you cannot eat
SO, after researching....rather than blending my own
(commercially made is more sanitized & easier)
I am looking at this to add to what little I still consume by
mouth and the Iso liquid formula I ingest via the PEG tube
in
my stomach.
and my response to him...
"should I cry? or laugh? "
at his answer......
ALS/JournalLKC
Tuesday, February 11, 2014
additional food choices for the feeding tube...
In trying to increase the effectiveness of my feeding tube.....
I found this somewhere on the internet after doing some research.
I also looked at the various commercial baby food company sites for further information.
1. Stage 1 baby food such as carrots and peas. These are packed with vitamins and minerals because it's all natural. They have no clumps and are a cinch to mix with your shake. This will add around 25-30 calories for about 2.5 oz of baby food. I would recommend Gerber's Naturelock products for this as there is no sodium and extra additives.
--
FRUITS etc. and veggies.....would be my first choice.
I found this somewhere on the internet after doing some research.
I also looked at the various commercial baby food company sites for further information.
you can add to your liquid meals...
1. Stage 1 baby food such as carrots and peas. These are packed with vitamins and minerals because it's all natural. They have no clumps and are a cinch to mix with your shake. This will add around 25-30 calories for about 2.5 oz of baby food. I would recommend Gerber's Naturelock products for this as there is no sodium and extra additives.
These are great ways to regularly incorporate extra calories without making yourself feel too full. You can adjust the amounts you add as you go. You may want to start out adding small amounts like a tablespoon of baby food or 1/8 cup of dry baby cereal. By doing this, you can build yourself up to take more at a time and not feel so full. Just add extra when you feel like you're ready to take more.
If you feel funny about taking baby food... you shouldn't. Baby food is the same as adults would eat, just in a thinner form. Most are healthier than what adults would eat. Take for example Gerber's Naturelock 1st Foods Carrots - Ingredients: Carrots, Water.
After all, it's good enough to start your life out on, so it's good enough to help you maintain it.
FRUITS etc. and veggies.....would be my first choice.
Enteral nutrition (also called tube feeding) involves the use of a feeding tube placed somewhere into the gastrointestinal track. Since it is through the GI tract that we normally eat, this method of support is more physiologically "normal" than the parenteral (intravenous) route.
By placing the tube in the GI tract and by adding nutrition here, we are taking advantage of the enzymes produced by both the stomach and intestines. This method is the first choice whenever possible. The enteral route also has less risk for infection.
Friday, January 10, 2014
ISO tube feeding ... mid morning 3rd breakfast.
My mid-morning breakfast that I "eat" via feeding/g-tube
Vanilla is the flavor of choice. .. for my tube feedings.
Some of my meds I am able to crush and put through the
that is in my stomach. 250 ml of which I usually consume
1/2 of at a setting as I must flush the tube with a total of
about 90 ml water to be sure it does not get clogged. I get
full rather quickly. I do eat some food throughout the day by
mouth.
Vanilla is the flavor of choice. .. for my tube feedings.
Some of my meds I am able to crush and put through the
tube. ..which makes taking them much easier.
IF I were to be relying totally on the liquid diet through the tube.....I would be
doing this 8 times a day.......................
not there yet. I am supposed to consume apx 1700+ calories a day. My average
consumption, has been under 1000 a
day...not a good thing. Believe me, I AM trying to get it higher...more difficult
than you might think.
Enteral nutrition (also called tube feeding) involves the use of a feeding tube placed somewhere into the gastrointestinal track. Since it is through the GI tract that we normally eat, this method of support is more physiologically "normal" than the parenteral (intravenous) route.
By placing the tube in the GI tract and by adding nutrition here, we are taking advantage of the enzymes produced by both the stomach and intestines. This method is the first choice whenever possible. The enteral route also has less risk for infection.
Monday, December 16, 2013
I am sharing with you an early
<Merry Christmas and a Happy New Year>
I had to make the decision, as to go with a ventilator
in order to continue life longer with the ALS/Lou Gehrig's
and the decision is yes for the moment pending any issues.
I hope for the best, but, sometimes things don't work out
... in light of my visit to OSU tomorrow (Tuesday 12-17) for
my surgery to insert a PEG feeding tube. I am at 50% of
my breathing capacity,,,and so it was now or never to have
this done.
I had to make the decision, as to go with a ventilator
following surgery or not
if need be...if it helps...
in order to continue life longer with the ALS/Lou Gehrig's
Disease....
and the decision is yes for the moment pending any issues.
I hope for the best, but, sometimes things don't work out
that way...and I just want to have things in order just in
case.
The connections I have made with my 'friends' , have been a
The connections I have made with my 'friends' , have been a
great 'positive' in my life...esp following my ALS diagnosis
earlier this year.
Hopefully, the timing of this message was not needed....and
Hopefully, the timing of this message was not needed....and
I will be chatting with you once again in the future after I
am back home.
The best of the holidays to you and your families :),
Lindsey
Wednesday, December 11, 2013
Unexplained choking ~ laryngospasm <> PANIC MODE!!!
laryngospasm, the vocal folds go into a spasm that closes off the airway. The person may panic and be unable to breathe.
THAT^^^ is one of my biggest issues^^^ that comes on VERYquickly....and puts me into a panic mode.
Again >>>It begins extremely quickly......and is instantaneous.
I just emailed this to my family members>>>"YOU should ALL read this and be aware in case I need your help!! Thank you."
From the MDA website:
"Unexplained choking" <>
One form of choking seems to come on out of the blue, even
happening when the person isn’t eating anything.
A laryngospasm is a sudden tightening of the throat which
occurs when liquid or saliva go the wrong way into the
larynx; it also can be triggered by acid reflux, smoke, strong
smells, emotion, alcohol, cold or rapid bursts of air, and
even spicy foods.
In laryngospasm, the vocal folds go into a spasm that closes
off the airway. The person may panic and be unable to
breathe. After a few seconds, it’s usually possible to suck in
a thin, wheezing breath.
Laryngospasms usually clear before the person loses
consciousness. There are different tricks for shortening their
duration.
Encourage the person to try:
- holding the head back and taking a quick “sniff” to break
- the breathing pattern;
- swallowing repetitively;
- exhaling in a gentle sustained breath, like a long soft
- whistle without puckering the lips;
- breathing in slowly through the nose rather than mouth;
- and
- pulling in breath from the belly rather than breathing
- shallowly.
Some people use Lorazepam Intensol — a concentrated
liquid that must be kept refrigerated. Place 0.5 ml under the
tongue or in the cheek, and let it be absorbed by the
mucus membranes in the mouth.
During the spasm, caregivers should stay calm and offer
reassurance, gentle back rubs and support. Although
usually not dangerous, this experience is exhausting and
upsetting for everyone."
GO HERE>
Friday, December 6, 2013
I want to be here for Christmas with my family...PEG insertion 12/17/13
As of today (12/6), 11 days (12/17) and waiting until my surgery to have inserted a PEG feeding tube into my stomach.
Lots of things on my mind right now....
finding it quite hard to focus.
I have to make the decision as to whether or not to accept going onto a ventilator IF things don't go so well during the surgery......
I know I am the only one who can make that decision.
I am living in a state of animation right now......
I want to be here for Christmas with my family.
ALIVE and well.
I have a lot to discuss with God.
Lots of things on my mind right now....
finding it quite hard to focus.
I have to make the decision as to whether or not to accept going onto a ventilator IF things don't go so well during the surgery......
I know I am the only one who can make that decision.
I am living in a state of animation right now......
I want to be here for Christmas with my family.
ALIVE and well.
I have a lot to discuss with God.
Wednesday, December 4, 2013
How many times a week are you asked, "How are you?"
How many times a week are you asked, "How are you?"
by Carol Eustice
"How many times a week are you asked, "How are
you?" It seems to roll off the tongue after "Hi" or
"Hello." Literally, "Hi, how are you?" is run together in
such a way that you wonder if people even know
what
they asked, if they want a real answer or if it has just
become a robotic greeting.
obligatory response, "I'm fine" or "I'm doing well."
That's how most people reply, even when they are not
fine or doing well.
by Carol Eustice
"How many times a week are you asked, "How are
you?" It seems to roll off the tongue after "Hi" or
"Hello." Literally, "Hi, how are you?" is run together in
such a way that you wonder if people even know
what
they asked, if they want a real answer or if it has just
become a robotic greeting.
The question doesn't only come from your dear
family and friends. People you pass on the street,
people on the phone, just about anyone you
encounter for any reason may toss that overused
question at you.
We all realize that people have to say something.
There has to be some sort of opening line; otherwise,
we would just be nodding and grunting at each other.
But the question feels strangely akward sometimes.
The Obligatory Question
The obligatory question really calls out for theobligatory response, "I'm fine" or "I'm doing well."
That's how most people reply, even when they are not
fine or doing well.
But to say you are doing well when you really are not
can feel inappropriate and even annoying to people
with chronic health conditions, such as ALS. It is
honestly difficult to exchange pleasantries when you
feel anything but pleasant.
The Genuinely Interested
There are people who ask the question and genuinely
want to know how you are doing. They ask for the
right reasons and listen to your full answer because
they truly care. They don't try to one-up your story.
They don't offer unsolicited, off-the-wall
solutions. They simply care. You might expect this
from your closest family members, but sometimes it
can be a person you barely know who seems to care
the most.
The Quickly Disinterested
It also seems that there are those who are interested
in your response, but with one provision -- keep it
short. They don't want you to say you are doing well if
you're not -- but they aren't interested in every detail
from your last doctor's appointment either.
If you offer too many details, the person may not fully
understand. They may not feel comfortable asking
you to explain. If this is the case, too much
information can cause the other person to become
disinterested, feel awkward or even to be sorry they
asked.
The Bottom Line
Living with a chronic disease is challenging. It is
helpful to recognize problems you are having and
want to talk about how you are doing, especially when
asked. It may be best to discuss your health to any
significant degree within a support group or with a
select group of people you know will understand.
If you aren't finding that select group easily, be wise
and disclose whatever you want to your journal Yes
, on a daily basis, tell it to your journal. It's your
outlet, yet it's private. Your journal will never shy
away, become disinterested or disappoint you."
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Thank you Carol for your insight and for putting this
into words for me :)
It helped me to share these feelings with those of you
who are reading this blog.
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