Hello Jim @jimhd
I haven’t been able to get back in to the system since I sent the last one until tonight.
But I see you have had enough people respond to you message.
Something that I missed telling you about using the pump, which I use for my overnight feeding.
This newer pump has 2 bags attached to it.
One is for water and the other bag is for whatever formula food you are on.
I do 4 cans of food on the overnight.
Each can is 475 calories and is 8 fluid ounces, or 237 ml and is called Two Cal-HN
The water bag I usually fill up to about 700 ml of water.
The water is needed to keep you hydrated and also to help digest the formula, it’s called flushes. You set the pump up to the rate of formula you want per hour, such as 240 ml and at the end of each hour the pump will switch to give you water ever amount of water you per hour such as 120 ml per hour. Once you set it up you don’t ever have to chance. All you have to do is prime the pump ever time you use it and the rest is all automatic according to your setting. What water is left over in the morning i just continue to do flushes.
Again I like the overnight feeding as it stays with me longer and I maintain weight better.
Also it gives me more free time during the day.
Now the gravity feed that I use during the day time is strictly one bag filled with the formula.
You can set the drip rate to what you want but it manual control.
Flushes still need to be done.
But the flushes are done at the end by using a syringe and pumping at least 120 to 180 ml of water into the feeding tube.
Then throughout the day you should flushes with water to keep you hydrated.
But I have also put liquids down like home smoothie, which are not real thick, coffee, not real hot coffee, or juices.
Thought you might like to know more information it.
You don’t want to put anything down down that is really thick and plug it up.
And I disagree with you about when you may need to make the decision on needing a tube, or perhaps should I say when you will be ready for it.
But time will tell.
I went through this same things you are were you have to eat real slow chew everything, and etc.That time will begin getting longer and longer. Food gets cold or spoiled. Everyone else is done eating 30 to 45 minutes sooner then you have.
Takes 1 hour or more to eat a meal. people start complaining about it.
Your not getting enough nourishment
Start losing weight.
And the list goes on.and on.
You simply can do this at each meal 3 times a day and spending minimum of 4 to 6 hours just eating.
What has caused my swallowing issues or should I say sudden on come of the voluntary tongue and throat muscle from responding ?
You might say that swallowing have been an on going issue since after the first radiation therapy back in 1973 after my first parotid gland cancer journey on the right side. Through the years I was having to give up certain kinds of food that I just couldn’t get down.
I love pizza and back in the 90’s the meat lovers special became really popular and I just loved it.
But by late 90’s I had to give up pizza.
Then it started to be beef, like steaks and etc. in 2000’s
By then weight issues started coming in and in 2009 I agreed to the feeding tube, but I only used it part time.
Chicken wasn’t an issue until after my 2nd journey with my 2nd the left side parotid gland cancer journey, which was actually my 3rd journey cancer in 2012. I had basil cell cancer on my nose in 2002/2003, which was the 2nd journey with cancer. It took 2 surgeries before they had cleared the margins and didn’t need any treatments.
But this left side parotid gland cancer also required radiation therapy.
So the above gives you a very general ideal of what I mean over the years. It was a slow but steady decline where I had to give up certain foods.
But then at the beginning of 2014 I notice now I am getting down to just sea foods, eggs soups and etc.
Then all of a sudden in July 2014 i could get anything down not even liquids.
My voluntary throat and tongue muscles would move.
Mind you I have been having a number of EGD/Dilatation procedures done every year for a restrictor that was just below the airway.
That was the first thing everyone wanted to put the blame on.
Of course the GI denied that was the cause.
The ENT had no clue and really was concerned about finding out why.
Finally my radiation oncologist stepped up to the plate and took control of finding out what happened cause she knew the doctors were going to blame her for it.
She got me into a neurologist and he immediately had me set up with all kinds of nerve testing, which all came back negative.
He finally said it has to be from the radiation but not from 2012 but from back in 1973.
It get renewed energy from t he radiation of 2012 and was it destruction path again.
But my radiation oncologist didn’t believe that we started reaching out to like Mayo Clinic and they rejected us.
And tried another neurologist at University of Michigan hospital. He said same thing radiation from 1973.
And tried several other ideas and all failed.
o here we are over 3 years later and still have no idea why so there is no diagnosis for this at this time
Perhaps this osteomyelitis problem is the cause as it has some of the same symptoms.
Once this heals wouldn’t it be great if some of these other issues cleared up?
Well, I am or was an research engineering in my career 30 + year at Ford.
So I guess it’s my nature to want to research things and get an understanding of what the doctors are talking about when I see them.
I call it proactive. Doctors my not like it but that’s there problem/
But like you,it is also being of curious nature and also little bit of worrying goes on.for me too.
It’s not being obsessive.
Springfield, MO today is one of the biggest areas where square Dancing is still alive today.
It’s great that you are into music and piano. That’s good therapy in itself.
Just like my square dance and round dancing is to me.
It’s both mental and physical benefits.
TO bad about your sister and never getting closure on what cause her to pass on.
Well, this is a lot longer then I intended it to be