Re: meds

[Guest guest]

I think this is right but if I am wrong someone will tell us.

1cc=1ml

5ml=1tsp

meds

Hi all- I know one time when I got my grandchild she had to take meds and it

said cc's. They usually brought something for me to measure with but this

time I only had a teaspoon to measure by. When I called to find out how much

I

was told 2 tsp. I knew that could not be right so I called the druggist to

find out. Has anyone else had a problem converting things? Is there some

kind

of chart for this?

I'm interested in some high calorie recipes for a cf child. Any books or

online ideas on this.

Glenda gmom to Jasmine, red haired girl

[Guest guest]

you are right, but and this is a big but, not all teaspoons

are 5 cc. Best to get a measuring cup, like the ones that come with

liquid medicine or a measuring syringe.

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

> I think this is right but if I am wrong someone will tell us.

> 1cc=1ml

> 5ml=1tsp

>

>

> meds

>

>

> Hi all- I know one time when I got my grandchild she had to take

meds and it

> said cc's. They usually brought something for me to measure with

but this

> time I only had a teaspoon to measure by. When I called to find

out how much I

> was told 2 tsp. I knew that could not be right so I called the

druggist to

> find out. Has anyone else had a problem converting things? Is

there some kind

> of chart for this?

>

> I'm interested in some high calorie recipes for a cf child. Any

books or

> online ideas on this.

>

> Glenda gmom to Jasmine, red haired girl

>

>

>

[Guest guest]

Hi everyone,

I have had a lot of success giving Zach his meds with an Exacta-med

Oral Dispenser. When Zach is on Zithromax a dispenser comes with

the bottle. I really liked using it but the garbage disposal took

chunk out of it and I couldn't use it anymore. I contacted the

company, Baxa Corp., and they sent me a case (100) for less than

$30. The fewest you can buy is 100, but they work great. Zach is

still at the age that his medicine is given by the ml. The syringe

is great because you know that all of the medicine is pushed out.

With the droppers we were using, we would find a half ml was left

and would not squirt out. Some medicines were too thick to use in a

dropper, but the syringe works with thick liquids. Also, the

syringes come with a little blue cap to use as a stopper. We can

get the syringes ready and just leave a note when to give Zach his

meds. His grandma does not have to mess with anything but squirting

the medicines in his mouth because we can get everything ready ahead

of time.

This is their website.

http://www.baxa.com/Catalog/SubCategoryItemList.asp?SubCategory=2

Sara - mommy to Zach 19 months wcf

> > I think this is right but if I am wrong someone will tell us.

> > 1cc=1ml

> > 5ml=1tsp

> >

> >

> > meds

> >

> >

> > Hi all- I know one time when I got my grandchild she had to

take

> meds and it

> > said cc's. They usually brought something for me to measure

with

> but this

> > time I only had a teaspoon to measure by. When I called to

find

> out how much I

> > was told 2 tsp. I knew that could not be right so I called

the

> druggist to

> > find out. Has anyone else had a problem converting things?

Is

> there some kind

> > of chart for this?

> >

> > I'm interested in some high calorie recipes for a cf child.

Any

> books or

> > online ideas on this.

> >

> > Glenda gmom to Jasmine, red haired girl

> >

> >

> >

[Guest guest]

We love these. We have some large ones for antibiotics and some very tiny ones

for Patti's Zantac and Reglan which have odd doses of 1.8cc and 1.2. Our

pharmacist thought we were crazy for ordering a whole box, but we have never

regretted it. That thirty dollar box has made it two years, so it was worth the

money.

Dawn mom of 4, 7 and under, the youngest wcf

-----

[Guest guest]

Sara,

These are the ones that we use as well. I like them because like

you said you know exactly how much you are giving them.

Fortunately I have been able to get a supple from the hospital.

you know as much as we pay to stay there a few syringes is not that much

to ask for. If you parents have a good relationship with some of your

nurses explain that you would like some to bring home I have had no

trouble at all getting them. I also try to be thrifty and boil them in

water on the stove for removal of any thing on them after each use. I

love the stoppers too it makes it really easy to travel as well instead

of bringing all meds you just draw up all that you will need and bring

them with you. I keep them in separate bags if the same dose so that I

know exactly what I am giving Colgan.

I am going to order some off the net though from your site that

you sent because I don't like to use them to much I am afraid of

bacteria. Do you only use once? If not what do you do to clean them?

Thanks for sending that info. Do you order any other products from them

I am looking for a place to order masks from. I use them as well as

anyone who might come over that has a bug or cold or anything going on.

I hope that Zachs runny nose gets better soon. When do you see ENT? My

little one fixed his runny nose problem today. He has been really bad

since the NG tube was placed today he wa so bad and coughing from

drainage that he woke from his nap coughing and started to vomit so

violently that he gaged the tube out of his mouth. This was YUCK.

Anyways I called his cf doc always has his pager on. Well he told me

not to go and get it put back in to call office in the am and we would

talk about other alternatives to night feeds. He finally sees what I

have been telling him that the tube just brings on too many secreations

for Colgan. UGHHHH I just hope that they will keep him on feeds because

he is so tiny.

Well I have an appointment with the peds clinic on base to meet with the

new doctor that is taking Colgan over at 8:00 am so I better get my

little butt in bed.

talk to you all tomarrow

hope that each of you had a wonderful weekend

Ashauna

[Guest guest]

if it is a measuring teaspoon or one that you get with the med it should be 5cc.

I don't use the ones from the silverware drawer for meds for that reason. With

those you never know how much is going in them! Sorry for not being clear about

that. The same goes for table spoons (15ml). you should always use a measuring

spoon or dosing spoon for them too. (I usually just use an oral syringe to be

more accurate but the label on the bottle sometimes says tea or table spoon)

meds

>

>

> Hi all- I know one time when I got my grandchild she had to take

meds and it

> said cc's. They usually brought something for me to measure with

but this

> time I only had a teaspoon to measure by. When I called to find

out how much I

> was told 2 tsp. I knew that could not be right so I called the

druggist to

> find out. Has anyone else had a problem converting things? Is

there some kind

> of chart for this?

>

> I'm interested in some high calorie recipes for a cf child. Any

books or

> online ideas on this.

>

> Glenda gmom to Jasmine, red haired girl

>

>

>

[Guest guest]

I just order them from the home healthcare company and the insurance pays for

them.

Re: Re: meds

Sara,

These are the ones that we use as well. I like them because like

you said you know exactly how much you are giving them.

Fortunately I have been able to get a supple from the hospital.

you know as much as we pay to stay there a few syringes is not that much

to ask for. If you parents have a good relationship with some of your

nurses explain that you would like some to bring home I have had no

trouble at all getting them. I also try to be thrifty and boil them in

water on the stove for removal of any thing on them after each use. I

love the stoppers too it makes it really easy to travel as well instead

of bringing all meds you just draw up all that you will need and bring

them with you. I keep them in separate bags if the same dose so that I

know exactly what I am giving Colgan.

I am going to order some off the net though from your site that

you sent because I don't like to use them to much I am afraid of

bacteria. Do you only use once? If not what do you do to clean them?

Thanks for sending that info. Do you order any other products from them

I am looking for a place to order masks from. I use them as well as

anyone who might come over that has a bug or cold or anything going on.

I hope that Zachs runny nose gets better soon. When do you see ENT? My

little one fixed his runny nose problem today. He has been really bad

since the NG tube was placed today he wa so bad and coughing from

drainage that he woke from his nap coughing and started to vomit so

violently that he gaged the tube out of his mouth. This was YUCK.

Anyways I called his cf doc always has his pager on. Well he told me

not to go and get it put back in to call office in the am and we would

talk about other alternatives to night feeds. He finally sees what I

have been telling him that the tube just brings on too many secreations

for Colgan. UGHHHH I just hope that they will keep him on feeds because

he is so tiny.

Well I have an appointment with the peds clinic on base to meet with the

new doctor that is taking Colgan over at 8:00 am so I better get my

little butt in bed.

talk to you all tomarrow

hope that each of you had a wonderful weekend

Ashauna

[Guest guest]

Hi Ashauna,

Good luck today. I hope they find a way to help him with his feeds.

I never thought to ask the hospital for syringes. That is a good

idea.

I just wash them in soap and water. I have a drying rack that I

used for his baby bottles and let them air dry. I wasn't sure that

they were dishwasher safe or safe to boil. I do reuse them though.

I will boil them now. That is a smart thing to do.

Sara - mommy to Zach 19 months

> Sara,

> These are the ones that we use as well. I like them

because like

> you said you know exactly how much you are giving them.

> Fortunately I have been able to get a supple from the

hospital.

> you know as much as we pay to stay there a few syringes is not

that much

> to ask for. If you parents have a good relationship with some of

your

> nurses explain that you would like some to bring home I have had no

> trouble at all getting them. I also try to be thrifty and boil

them in

> water on the stove for removal of any thing on them after each

use. I

> love the stoppers too it makes it really easy to travel as well

instead

> of bringing all meds you just draw up all that you will need and

bring

> them with you. I keep them in separate bags if the same dose so

that I

> know exactly what I am giving Colgan.

> I am going to order some off the net though from your site

that

> you sent because I don't like to use them to much I am afraid of

> bacteria. Do you only use once? If not what do you do to clean

them?

> Thanks for sending that info. Do you order any other products

from them

> I am looking for a place to order masks from. I use them as well

as

> anyone who might come over that has a bug or cold or anything

going on.

>

> I hope that Zachs runny nose gets better soon. When do you see

ENT? My

> little one fixed his runny nose problem today. He has been really

bad

> since the NG tube was placed today he wa so bad and coughing from

> drainage that he woke from his nap coughing and started to vomit so

> violently that he gaged the tube out of his mouth. This was YUCK.

> Anyways I called his cf doc always has his pager on. Well he told

me

> not to go and get it put back in to call office in the am and we

would

> talk about other alternatives to night feeds. He finally sees

what I

> have been telling him that the tube just brings on too many

secreations

> for Colgan. UGHHHH I just hope that they will keep him on feeds

because

> he is so tiny.

>

> Well I have an appointment with the peds clinic on base to meet

with the

> new doctor that is taking Colgan over at 8:00 am so I better get my

> little butt in bed.

>

> talk to you all tomarrow

> hope that each of you had a wonderful weekend

>

> Ashauna

[Guest guest]

I wash out my med droppers when I wash the dishes. I don't have a dish washer

so I draw the water as hot as I can adding soap and bleach. I put in the

glassware, silver ware, and med droppers (which have all been taken apart).

Then I let them soak until the water is cool enough for me to put my hands in.

I run water in them to rinse them. We set them out to dry on a tea towel and

don't put them back together again until they are completly dry. That's why I

like to have so many. Some are clean and ready to use, some are soaking, and

some are drying. We usually throw them away when the markings on them

disappear.

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

Did your doc put a script in for you to do this or did you just call

and get them ordered for yourself. We also have an on-going account

with home health so this would be a great idea for me to get them

instead of out of pocket. I hate that

Ashauna

[Guest guest]

Sara,

they boil just fine. I tried to put in dishwasher and opened to

find them all over the place. This was fun to dig out of all the nucks

and crannys of dishwasher. Oh well you have to try to know huh?

I usually get a lot from hospital. I also keep all of the ones that

they give me for meds in hospital and wash up and take home. This saves

me money. I am sure that some would frown on this but you know what I

would rather be able to buy fun toys than yucky med syringes.

Love to you and Zach

Ashauna

[Guest guest]

Dawn,

Me tooo when it gets to where you can't see the numbers its time

to trash

Ashauna

[Guest guest]

I don't blame you. Toys are better than syringes hands down!

I took special blue spoons from the hospital when Zach was diagnosed.

The nurses let us have them because Zach liked them so much.

SAra

I also keep all of the ones that

> they give me for meds in hospital and wash up and take home. This

saves

> me money. I am sure that some would frown on this but you know

what I

> would rather be able to buy fun toys than yucky med syringes.

>

> Love to you and Zach

> Ashauna

[Guest guest]

Ashauna,

When I call in to get supplies for 's tube feeds like her formula and the

pump bags , I just ask for oral syringes too. Since I get the other kind for

the g-tube meds they just add them to my order.

I had always saved all the oral syringes when we were in the hospital since

they only use them once. I would wash them out in the sink in the hospital room

with the anti-bacterial hand soap and put them in the drawer when they were dry.

At the end of the admission a I always had a ton of the things and I would just

take them home and boil them. I was having trouble finding the good ones when I

started to run out of them. Then it occurred to me that the home healthcare

probably has them so why not ask for em with the regular order. I haven't had a

problem since. I didn't need a prescription or anything.

Re: Re: meds

Did your doc put a script in for you to do this or did you just call

and get them ordered for yourself. We also have an on-going account

with home health so this would be a great idea for me to get them

instead of out of pocket. I hate that

Ashauna

[Guest guest]

Do you remember the little pacifiers that they have? Colgan had the

ugliest one that had been cut up to pieces practically to fit around all

of the tubes by mouth. The nurses thought that it was so funny that it

was the only pacifier that he would take. Even one the same color and

size he knew and would pitch a fit about it. Even then he was

demanding.

You talking about the spoon made me think of this. I remember I would

laugh and laugh because it was so cute. how he knew I'll never know but

he did.

Ashauna

[Guest guest]

,

Thank you for the info. I definately will do that. I am having a

bad day so I thought that I would vent.

Colgan got so congested from the NG tube that he woke from a nap

yesterday coughing so hard that it made him throw up. He vomited the

tube out. So needless to say he does not have it in right now. I

called the doc and explained why he had done this (congestion and all)

well he told me not to get the tube back in and call this morning to see

what to do.

I called this am and again the afternoon and still never received

a call back I am furious at this point because this means two nights

without feedings. I talked to the receptionist and she said that he was

not going to have me put it back in at all. Does this make any sense? I

could understand if he had other plans in mind but it seems like he is

just not going to do anything about it at all. Colgan has been on feeds

for 3 weeks now and has not gained even one ounce. He is not even on the

growth chart at all and they do not seem to want to do anything about

it. What do you think I should do? I am at a loss right now.

sorry to vent again.

Ashauna

[Guest guest]

Asauna,

It sounds to me like your doctor is stumped. Maybe he is consulting

with another doctor. At Abby's clinic, the 7 pulmonary doctors meet

once a week to review thier patients' treatment plans. The Columbus

Ohio CF Clinic treats ~360 people with CF. Ohio has 3 CF Clinics

(Columbus, Cleveland, Cincinnati). AFB is in

Dayton. That would be about 1 to 2 hours to any of the 3 CF

clinics. We think that the weather here is great too, but I guess it

depends on what kind of weather you like.

Gale

> ,

> Thank you for the info. I definately will do that. I am

having a

> bad day so I thought that I would vent.

> Colgan got so congested from the NG tube that he woke from a

nap

> yesterday coughing so hard that it made him throw up. He vomited

the

> tube out. So needless to say he does not have it in right now. I

> called the doc and explained why he had done this (congestion and

all)

> well he told me not to get the tube back in and call this morning

to see

> what to do.

> I called this am and again the afternoon and still never

received

> a call back I am furious at this point because this means two nights

> without feedings. I talked to the receptionist and she said that

he was

> not going to have me put it back in at all. Does this make any

sense? I

> could understand if he had other plans in mind but it seems like he

is

> just not going to do anything about it at all. Colgan has been on

feeds

> for 3 weeks now and has not gained even one ounce. He is not even

on the

> growth chart at all and they do not seem to want to do anything

about

> it. What do you think I should do? I am at a loss right now.

>

> sorry to vent again.

> Ashauna

[Guest guest]

Ashauna,

Didn't they teach you how to put it back in before they sent Colgan home

with it??? Our daughter has a G-tube and prior to that had an NG-tube.

We were not allowed to take her home from the hospital after she got her

NG tube until we were taught how to properly put it back in. It is

really not hard to do. It is certainly not fun and they don't enjoy it

but it certainly something a parent can do. I just thought I would ask.

It may just be a difference in how hospitals do things. I just can't

imagine if I didn't know how to put it back in since Emma either pulled

it out or vomited it out on a daily basis for the whole nine months that

she had it. I certainly would not have been able to take an hour ride to

CHOP to get them to put it back in.

Emma was not on the growth chart when she got hers and it was slow at

first but its now two years later and she is just under the 75th

percentile. I would focus on getting the routine established and then

worry about what he is gaining. I don't remember if he is getting

viocase during his night feeds but if not, I would think that would be

the first course of action, followed by slowly increasing how much he

gets each night. Our doctors worked closely with us to figure this stuff

out at first and then eventually we started increasing it on our own as

we got more comfortable with it. However, the most important thing is to

first get the routine established and the problems with mucus resolved

and once these issues are passed, then you can worry about how to get

some weight on him.

Colgan's doctor may be considering if he needs surgery to have a G tube

or possibily a JG tube put in. The JG tube bypasses the stomach and goes

directly into the intestine which elevates some of the mucus and vomiting

problems which occur in the stomach. Good Luck. I know it's not fun. I

have definately been there.

- mom to Emma 3 years w/cf and acid reflux and Isabelle 5 years

wo/cf

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[Guest guest]

Ashauna,

Vent away! I am wondering if maybe the doc wants to see if Colgan's appetite

will pick up without the tube in? The constant congestion is so hard to deal

with. was congested all the time for what seemed like forever. Every

time she would cough she would throw up whatever she ate. Then the reflux would

make the cough worse, too.

Remember that missing a few feeds will not be the end of the world. Yes, it

would be better to have them but maybe you can make it up at another time. You

will eventually get this situation figured out and he WILL gain weight.

This is just my opinion -

I would get on the phone with clinic first thing in the AM and tell them that

you will stay on hold until they put a doc or nurse practitioner on the line.

This will give them the idea that you are serious here and not just another

stressed out mom. Even if it is not the doc you regularly see they will put a

fellow on with you. Tell them that while you are concerned with the tube, the

main problem is the worsening congestion. If not for the congestion, the tube

would be in still. I can't remember if Colgan is on any antibiotics at this

point but if he is, ask for a change if not ask for one. There is something

going on if he is congested all the time. (any green or yellow phlegm is a sign

of infection) Ask about over the counter or perscription allergy meds if they

refuse to give an antibiotic.

There has to be something to help you get this congestion under control.

If they won't do it over the phone then request to be seen as a sick visit. I

realize that this will probably be difficult for you to swing but if you can get

to the clinic and have him seen you might feel better and maybe they'll put the

tube back in for you. Sometimes you have to keep reminding the docs that a) you

exist and your child is still having the same problem. If they won't see you

or you cannot get to clinic on short notice, call them every other day to

" update " them on the congestion problem. With some docs, if you don't complain

constantly about something- they think the problem magically disappeared.

just my opinion

Re: Re: meds

,

Thank you for the info. I definately will do that. I am having a

bad day so I thought that I would vent.

Colgan got so congested from the NG tube that he woke from a nap

yesterday coughing so hard that it made him throw up. He vomited the

tube out. So needless to say he does not have it in right now. I

called the doc and explained why he had done this (congestion and all)

well he told me not to get the tube back in and call this morning to see

what to do.

I called this am and again the afternoon and still never received

a call back I am furious at this point because this means two nights

without feedings. I talked to the receptionist and she said that he was

not going to have me put it back in at all. Does this make any sense? I

could understand if he had other plans in mind but it seems like he is

just not going to do anything about it at all. Colgan has been on feeds

for 3 weeks now and has not gained even one ounce. He is not even on the

growth chart at all and they do not seem to want to do anything about

it. What do you think I should do? I am at a loss right now.

sorry to vent again.

Ashauna

[Guest guest]

Thanks Gale,

The unfortunate thing is that there is only one pulomary doc at

this clinic. I do not understand what is going on.

Ashauna

[Guest guest]

,

At times I wonder if he is trying to figure out anything. I still

have not heard from him at all not even a phone call from his nurse. I

keep calling and nothing just that " for now he does not want to put it

back in. " This is very aggrivating to me because I don't like to feel

like the Docs are telling me what is best for my son when I know that he

needs this. Yesterday without the tube he only took 16 oz of formula.

I have no way to force feed if he refuses to eat as he does very often.

No they did not teach me how to replace the tube only to go to er if

it came out. I think that it was because a resident was watching over

us not our actual doc. He and I really got into it while we were

there so he was just probably ready to get me out of there and for that

matter I was ready to get out as well. Colgan had it in for 3 weeks

without it coming out so we did pretty well in that area it is just

wondering what the hell is going on now that is making me crazy.

Thanks

Ashauna

[Guest guest]

,

This is my thought to that if the congestion where not there the

tube would still be in and there was never any talk of taking it out.

Now all of the sudden it is out and for the next couple of weeks will

stay out. I did finally get ahold of the docs. nurse. She told me

that they just wanted to monitor his weight gain with out the tube so it

is back to the same thing all over agian.

I finally did not feel stressed out about him not eating because I

knew that I had a way to feed him reguardless. Now again I have to turn

all the lights off in the house no tv no music no sound at all or he

will not eat and then I am still lucky if I get 4 to 5 ounces down and

sometimes less than that. I fight with him for at least an hour each

time we sit down to eat and we do this every 3 hours. You can imagine

that we can not go and do much of anything unless I absolutely have to

because my son will not eat if we are in public. Well at least 90% of

the time. UGHHHHHHHH I do not understand this at all. I almost wish

that I never called the doctor to tell him the reason he threw up the

tube, because the congestion thing has been going on for 6 months with

no resolve. He takes Zyrtec every night before bed and this has not

stopped it. However, if he does not take it his is worse than without.

No he is not on an antibiotic. His nasal drainage is clear so they say

that it is not an infection. He has cultured staph twice in the last 4

months so possibly it has something to do with that. I asked doc.

exactly where it cultured at and he said that it was from throat culture

and that there was no way to know if it was in his lungs unless they did

a bronchoscopy. He did not want to do that for him right now. Do you

think that I need to take him to ENT he has never had ear problems or a

sinus infection. I don't know what we need to do for him.

The speech therapist thinks that he needs a MicKey button at the

least because of his horrible food avertions but I can not get anyone

else to see this.

I am sorry to go on and on about this. Has anyone had to deal with

this. The longer it draws out the more that I feel at fault for his

weight problem. I just cry sometimes because I am so frusterated and I

can't do anything about it.

Sorry to drag that out.

Ashauna