Re: Loriann/all- G-tube feedings and burp tube ?'s

[Guest guest]

I do turn the pump off for 15-30 minutes after learching/dry

heaves as well as empty some contents that come out the burp tube as

I assume that means she is too full. What really hit me today is

that maybe the reason she can't hold more than 2 1/2 comfortably is

because all the phlegm that used to come out is now going into her

stomach! I see it in the burp tube all the time as well as when I

disconnect the Mic-key attachment! If she is full of phlegm there

isn't much room for food, is there! I have also backed off on

boluses for now even though the Mayo surgeon's assistant told me to

do continue them. I don't see a point in her suffering either. She

is so miserable after them. She seems to handle 50 cc/hr. well and

handles 60 cc/hr. for an hour or so but not much longer. I will just

try to watch her and go her pace not the " norm " pace. I also see the

Pulmonologist on Monday and will discuss all these issues with him.

There has to be something we can do to help lesson the phlegm and

breathing issues she has been having. I haven't slept much the last

two nights as she is having problems sleeping and breathing. I may

look into getting some nursing care a couple hours per day for her so

I can rest more. I am quite burnt out right now. Not one of my

better weeks! Thanks to everyone who has been giving info to help

me!

Darla

> Darla,

> When advancing Zipporah's feeds did you just start one day?

Did you try

> a slow transition? Lucas had his tubes placed when he was 4 so I

don't have

> any experience at that young an age. I would recommend going back

to 20+

> hours and slowly increasing by 5 cc's an hour and decreasing the

time. A good

> friend of mine who's daughter is G-tube fed gave me the best piece

of advice. If

> Lucas didn't tolerate the hours or the rate we would turn it down

or off and

> wait a little while. I learned forcing it in them and either

making them

> uncomfortable or having them get sick didn't really accomplish

anything. I equate

> it with a child who you are feeding normally. If the child doesn't

eat the

> crust on the peanut butter and jam sandwich do you count it? i.e.

If you shut

> the pump off for 15 minutes or even an hour are you really starving

them?

> You do the best you can and not allow the feeding tube to run your

life. It

> will only make you and your child miserable.

> If you are getting alot of the formula back it can make her

feel just as

> bad as if she has gas. Did they do a stomach emptying scan on

her? Our GI

> doc did not do a nissen on Lucas due to past experience with a

child with mito

> who developed worse symptoms with a nissen. Lucas last test showed

he had a

> normal stomach emptying but he was still vomiting up formula. As I

was told it

> only measures how the stomach empties but can not tell you whether

the

> intestine does not empty quick enough for the stomach contents to

go in.

> Lucas has had a rough last 4 months with feedings although he had

done okay

> for 3+ years before that. I think this is just the nasty part of

mito where

> by you don't know what will take place that day when you wake up in

the

> morning.

> I hope this might answer some of your questions.

> Loriann

[Guest guest]

Darla,

I do agree with you that you may need some help. Not being able to sleep and be rested enough to care for Lucas was part of the reason it had prompted me to shut off feedings. Lucas is J-tube fed so that helps sort some of the feedings from the phlegm, too. Tube feedings seem overwhelming and I do know that Asenath has a tube so you are not a new tube feeder. I think I was more flustered when we were anticipating going back to oral feeds for Lucas. Although I doubt I will see that day. Our GI doc feels that there is not much more we can do for Lucas at this point. We are headed for palliative care clinic in about 2 1/2 weeks. I told our GI doctor last week went we went for our 6 month follow-up that this really was not quality of life for Lucas. Lucas has had more frequent unconsolable whimpering and crying spells. As a matter of fact when we went last week he had one of his spells. We are doing a trial of mestinon to see if we can help with the constipation and motility issues. Today was our second day on it and so far things are going okay. Sure hope the pulmonologist has some suggestions for you. Lucas has also been on allergy meds and Flovent. However due to Zipporah's young age I don't know if it is an option for her. I will be thinking about you. Keep us all posted.

Loriann

[Guest guest]

Daarla,

One other thing. You might ask the assistant why they are committed

to bolus feeding. When we aksed about this they said that it was to

have Billy be like other people and to prepare for a time when he

could transition off the tube. My queston to them was if he is never

going to come off the tube or at least for a long time why torment

him? They could not come up with an answer other than convience of

not being hooked to the pump and the transition thing. We finally

said this is nuts and went with the continuous drip. Also with the

mito kids you have to watch that they don't do a fast as they have

little reserves. The amount of time that is a fast can change if

their stress levels change.

When Billy got his trach the pulmonary doctor told us how many quarts

of mucus a person makes a day and I still don't know if I believe

her. She did say that the body can handle it and used it to smooth

the way for the food. I agree having too much muck in your stomach

sound like there wouldn't be room for food. She didn't seem to think

it was a big deal.

more to think about.

Twana

I have also backed off on

> boluses for now even though the Mayo surgeon's assistant told me to

> do continue them.