Re: hello again everyone

[Guest guest]

Ashuana,

I don't know how you do it. It will be SO NICE to have your husband

home and Colgan's eating under control. I hope that both things

happen really soon. Glad that you are back. Do you have lots of

military friends that can give you support?

Gale

[Guest guest]

Ashauna,

I am glad to hear that you and Colgan are home. I am so sorry you have been

having such a hard time. I can answer lots of questions about the MicKey

button. has had one for over 3 years now. She was 18 months when she

got it. We skipped the whole NG tube thing because she has a habit of pulling

things that are not stitched in (go to our site and check out " adventures in

G-Tubeland " and " the Picc line stories " pages) was eating but not enough

when she got her " tubie " . She had to have reflux surgery with the g-tube

placement, but it was all done by laporoscope so there were no big wounds to

worry about. I was told that the tube placement was not really a " surgery " but

if they are even making small incisions, I think it is surgery. Feel free to

e-mail me privately with any questions you have. We can also relate about

residents and fellows who are clueless. Vent all you want! About that cold

and the mask. Good idea. Whenever I am sick I wear one around (unless I

have gotten it from her) Now that she is older it is easier, I just have to

wear it when we are in very close contact, like when we are snuggled up for a

story or something

Mom of , 4 & 3/4 with CF

http://groups.msn.com/TeamJane

hello again everyone

Well after two long weeks in the hospital we are home again. Both Colgan and

I are so glad to be back.

We went in on the 12th of this month because Colgan was having a lot of

coughing spells and really congested. I kept hopeing that it would just be a

little bug but it just kept getting more ugly each day. MY clinician wanted me

to hold off and give him just one more day to show improvment so I did and well

obviously he did not.

Colgan cultured staph again. This is the second time in three months.

The first time he had 7 days of Tobramyacin and Fortaz and I really hoped that

it would have knocked it out. This time same thing 7 days of IV anti. At the

same time that we were fighting this we also started fighting him really bad

with eating. As you all know my little one is really not that interested in

eating at all anyway, but he ate a little. Now I am lucky if I get one 4 oz

bottle down him a day.

Colgan was sent home with an NG tube for a couple of weeks while we wait

for my primary to return from Hondourus (medical missions trip) He will be back

on Friday I don't think I have ever been so frusterated in my life with a Dr.

Not him but the residents at the hospital who had to watch up while he was out

of country. I really think that I new more about this disease than that stupid

idiot did about medicine at all. I really just wanted to choke him on several

occations.

Sorry totally went off on a tangent there. Colgan is doing

continuous feedings at night now and still is not gaining weight. Iam really

having a time getting his enzymes on track. One day too many then next not

enough so trying to find a happy medium. I really missed talking with you all

for my evenings. With my husband gone in Iraq I was at the hospital the entire

time. We live about 1 1/2 hours away so I am not comfortable leaving him there

alone.

At our next clinic visit on the 3 of Sept. we are going to talk about

putting a micky button in ( spelling I am not sure of ) Have any of you had to

work with this before? I am worried that he will not gain weight without one but

I also do not want him to have to have another surgery. At 7 months old he has

already had to go through so much I just want to make sure that I am making the

right choice about this.

Anyways, like I said I missed hearing about all of your little angels

and I sure hope that all of them are feeling great. I know there is some stuff

going around out there right now. Ughhhhh I think I have a touch of something.

Very cautiously I wear a mask each time I think that I might be getting sick and

am coughing. If only I could make everyone do the same. I am sure you all wish

the same huh?

Well I had better get to bed I look forward to jumping back into the

conversation again. That is if I can find a starting point. It really is hard

to get grasp of what has all be going on if you leave for a while.

Lots of love to all of you

Ashauna mother of 2 Maxwel almost 5 yrs w/ocf and Colgan 7 months w/cf

[Guest guest]

I'm so sorry that your baby has been sick. My 9 month (7 months

adjusted) old daughter has had a gastrostomy since she was 2 months

old. For the first three months, she had a PEG. This device is

sorta a pain because it has a long tubing that you have to deal

with. She had her Mic-key Button placed after 3 months of the PEG

and it's wonderful! It takes a little getting used to, but once you

get the hand of it - I think you'll love it. We use it to give our

daughter all of her enzymes. Pancrecarb -4's are the only enzyme

that work through a tube. There is a special recipie that you use.

We quit feeding Mikayla during the night about 2 months ago. We

felt that if she was night dripped, she should be elevated, which

requires a Danny sling. She was getting too big for the sling and

we felt like she needed to be able to sleep comfortably rather than

on her back in a sling. Also, I refused to have any tubing in the

crib without her on an apnea monitor. The sling helped prevent her

from getting caught up in the tubing or pulling it out herself. If

she needs extra formula now, we just bolus her. It works well. I

hope you can develop a plan that works for your family and that

Colgan's back to feeling better and chunking up soon. Good Luck!

Donna

mom to Mikayla, 9 months (7 months adjusted)

....who despises the term " CFer " ...

People are people, not to be known as their diagnosis.

[Guest guest]

The Creon 5 are also small enough to go through the tube. We just mixed a small

amount of applesauce with the enzymes and put the mixture in a syringe and push

through her button. Works really well if they are napping and you don't want to

wake them up for a feed.

Katy

Mom to Austin 4 no CF & Piper 13 months w/CF

[Guest guest]

Or you could just get the vioKase powdered enzymes that are made for the g-tube.

But don't make the mistake of trying to slip these to the kiddos orally- they

taste awful. I know I got some in my mouth by accident. bbllllleeeeech!

Re: Re: hello again everyone

The Creon 5 are also small enough to go through the tube. We just mixed a

small amount of applesauce with the enzymes and put the mixture in a syringe and

push through her button. Works really well if they are napping and you don't

want to wake them up for a feed.

Katy

Mom to Austin 4 no CF & Piper 13 months w/CF

[Guest guest]

Hi Ashauna, my daughter who turned 5 last month has had a Mic-Key G-

Tube since she was 18 months old. She is exclusively tube fed, as

she lost the suck-and-swallow reflex as an infant. Long story. But

we have had no problems with the Mic-Key. It's easy to keep the site

clean, and the button can be changed quite easily at home. We use

Creon 10 enzymes - just open the capsule like a Contact C and pour

the granules into the tube with her Peptamin Jr. Sometimes you have

to worry the plunger back and forth a bit to get the granules through

the narrow part. It's not so bad. One thing to be aware of is that

the tube sticks out from the stomach and attracts a lot of stares.

Rina is not self-conscious about it yet but the day will come... But

all in all, it was a great decision to go with the Mic-Key. The NG

tube is quite uncomfortable and I felt like an ogre re-inserting it

every time Rina coughed it out. With the Mic-Key we have been able

to keep her weight up above the 50th percentile and that has helped

her to overcome minor viruses and colds.

Another thing - if Colgan has had lots of courses of IV antibiotics,

be sure to have his hearing tested! Don't let the doctors blow you

off and tell you not to worry about it.

Good luck with everything.

Max, Dad to Rachael, Simon, Tova and Rina (with cf)

> Well after two long weeks in the hospital we are home again. Both

Colgan and I are so glad to be back.

> We went in on the 12th of this month because Colgan was

having a lot of coughing spells and really congested. I kept hopeing

that it would just be a little bug but it just kept getting more ugly

each day. MY clinician wanted me to hold off and give him just one

more day to show improvment so I did and well obviously he did not.

> Colgan cultured staph again. This is the second time in

three months. The first time he had 7 days of Tobramyacin and Fortaz

and I really hoped that it would have knocked it out. This time same

thing 7 days of IV anti. At the same time that we were fighting this

we also started fighting him really bad with eating. As you all know

my little one is really not that interested in eating at all anyway,

but he ate a little. Now I am lucky if I get one 4 oz bottle down

him a day.

> Colgan was sent home with an NG tube for a couple of weeks

while we wait for my primary to return from Hondourus (medical

missions trip) He will be back on Friday I don't think I have ever

been so frusterated in my life with a Dr. Not him but the residents

at the hospital who had to watch up while he was out of country. I

really think that I new more about this disease than that stupid

idiot did about medicine at all. I really just wanted to choke him

on several occations.

> Sorry totally went off on a tangent there. Colgan is

doing continuous feedings at night now and still is not gaining

weight. Iam really having a time getting his enzymes on track. One

day too many then next not enough so trying to find a happy medium.

I really missed talking with you all for my evenings. With my

husband gone in Iraq I was at the hospital the entire time. We live

about 1 1/2 hours away so I am not comfortable leaving him there

alone.

> At our next clinic visit on the 3 of Sept. we are going to

talk about putting a micky button in ( spelling I am not sure of )

Have any of you had to work with this before? I am worried that he

will not gain weight without one but I also do not want him to have

to have another surgery. At 7 months old he has already had to go

through so much I just want to make sure that I am making the right

choice about this.

> Anyways, like I said I missed hearing about all of your

little angels and I sure hope that all of them are feeling great. I

know there is some stuff going around out there right now. Ughhhhh I

think I have a touch of something. Very cautiously I wear a mask

each time I think that I might be getting sick and am coughing. If

only I could make everyone do the same. I am sure you all wish the

same huh?

>

> Well I had better get to bed I look forward to jumping back

into the conversation again. That is if I can find a starting

point. It really is hard to get grasp of what has all be going on

if you leave for a while.

>

> Lots of love to all of you

>

> Ashauna mother of 2 Maxwel almost 5 yrs w/ocf and Colgan 7 months

w/cf

[Guest guest]

I'm really sorry you guys have had such a rough time of it lately. We'll be

thinking of you and Colgan often.

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

[Guest guest]

Gale,

How are you and yours doing? I hope well. I guess that I just

sort of take one day at a time just like all of us have to do when it

comes to our little ones. Not to say that I am not pulling my hair out

by the end of the day. Well that is if my little Colgan has not pulled

it all out by then.

About the friends. I have one really good friend who is quite a

blessing. I don't know what I would do with out her. Her husband is

also over with mine. Unfortunately we have not been here long and have

not met many people, but I am sure so glad that I met her.

Lots of love

Ashauna

[Guest guest]

How is doing? I did get a chance to look at web site right

before we went into hospital. She is very cutty.

I was wondering. Did they do her reflux surgery because she was

getting a micKey in. I know the peds surgery requires a few tests of

this area before they will do the test. Colgan has had both and they

show signigicant reflux.

Ashauna

[Guest guest]

Donna

Thanks for the info. I have been really worried about the tubing in

his bed as well. I never thought about using the apnea monitor. Makes

sense. I really hate this NG tube I was driving down the road today and

he almost pulled it out.

That was a task trying to calm him down while I parked the truck in

the driveway to a school and retaped UGH

Ashauna mom to 2 Maxwel almost 5 and Colgan 7 months with cf

[Guest guest]

Ashauna,

They refused to put the MicKey in unless she got the reflux surgery. Her reflux

was horrendous, the worst case they had seen. So since the reflux was so bad,

She really needed the nissan to be safe. It really made things hard though

because it was wrapped very tight and she gagged a lot. I would still do it

again though, to keep her from aspirating.

has been great. She starts school on the 8th with one new teacher and

one that she had last year. before school starts she has a clinic visit, for

her annual studies.

I hope Colgan is doing well. does he try to pull out the ng tube?

Re: hello again everyone

How is doing? I did get a chance to look at web site right

before we went into hospital. She is very cutty.

I was wondering. Did they do her reflux surgery because she was

getting a micKey in. I know the peds surgery requires a few tests of

this area before they will do the test. Colgan has had both and they

show signigicant reflux.

Ashauna

[Guest guest]

I'm glad that you met someone to help out while your husband is

gone. You have a big job, taking care of two children by yourself.

We're all doing well here. My son, Nick, turns fifteen tomorrow.

Toni (my daughter), Tom (her husband) and Abby (my grandbaby 20 mo

wcf) are all coming to dinner tonight.

I bought Toni that Omega Diet book. She's only had it two days and

she can't put it down. She almost done reading it already. She's

been up past midnight the last two nights, reading. She's really

excited about the Omega Diet. I'm glad. I bought a copy for myself

too, but I'm only on page 4.

Nick got an electric guitar and an amplifier for his birthday. He's

15 and still noisy. :>)

Take care,

Gale

> Gale,

> How are you and yours doing? I hope well. I guess that I just

> sort of take one day at a time just like all of us have to do when

it

> comes to our little ones. Not to say that I am not pulling my hair

out

> by the end of the day. Well that is if my little Colgan has not

pulled

> it all out by then.

> About the friends. I have one really good friend who is quite

a

> blessing. I don't know what I would do with out her. Her husband

is

> also over with mine. Unfortunately we have not been here long and

have

> not met many people, but I am sure so glad that I met her.

>

> Lots of love

> Ashauna

[Guest guest]

Re: hello again everyone

" Hi Ashauna.....One thing to be aware of is that

the tube sticks out from the stomach and attracts a lot of stares.

Rina is not self-conscious about it yet but the day will come... "

Max, Dad to Rachael, Simon, Tova and Rina (with cf)

Funny, 's MicKey doesn't stick out all that much. You can't see it when

she has a shirt on and even in a bathing suit or her dance leotard it doesn't

stick out that much that people stare or comment on it. will walk around

and tell people about her " tubie " though.

[Guest guest]

Thanks Katy. I hope that they do decide to do button instead of keeping

tube because I am so afraid that he is going to aspirate or just even

pull the tube. It broke my heart seeing him fight to get it in once I

don't want to have to do this to him again and again.

love to you and your's

Ashauna mommy of Colgan and Maxwel my little angel boys

[Guest guest]

I know that Viocase it terrible Colgan was given that when he first was

diagnosed. They did it orally. I was quick to have them change it

after I found about how those enzymes work.

[Guest guest]

Max,

What a good name that is my oldest sons name ( well Maxwel but we

call him Max )

thanks for the information about the MicKey button. I am really

nervous about him having to get that done but I think that ultimately it

far surpasses the NG tube. I am sitting here typing watch him try to

get up on hands and knees finally. He will be crawling soon. Yes

independence. I know he will love it when he can start rummaging

through the house trying to get his little sticky fingers on everything.

About the Antibiotics. How many is a lot that would damage

hearing he has has 3 round in 5 months. to me that is a lot just

wondering what I might need to do.

Thank you

Ashauna mom of 2 Maxwel almost 5 and Colgan 7 months (cf)

[Guest guest]

Thanks Dawn

I appreciate everyones thoughts I know that mine are with all of you

on this list and your families

Ashauna mom of 2 little angle babies.

[Guest guest]

,

Send my best wishes about s annual and also for her starting

school this year. I am sure that she is glad to be going back huh? My

oldest is going to start next year I considered putting him in preschool

but then backed out because Colgan has had such a rough start at thi

ngs. I don't want Max bringing home stuff in addition to Colgan getting

sick I hate to see him sick as well.

Yes Colgan does try to pull out the tube. especially when he is

tired and rubbing his eyes. He feels it there and starts grabbing and

rubbing his nose. Don't know if you remember I am sure you do. How

many times did she reflux during the hour of the test. Colgan did 7

times. Large amounts.

Thanks

[Guest guest]

Ashauna,

was admitted at the time. her test was supposed to be a full 24 hrs but

it was taken out a bit early because of scheduling. It ended up being in for 23

hrs. She refluxed 300 times. Yes, three hundred times in twenty three hrs.

That works out to be something like 13 times an hour. And it was nearly

impossible to keep from pulling the PH probe out in those 23 hrs. The

doc's had never seen a case as bad.

is thrilled to go back and see her friends. she is not too keen on

making new ones of the kids who are going to be new to the class though. I hope

all the new kids in her class don't make her upset. Sometimes she is quite shy,

other times she makes more friends than anyone else. go figure.....

Re: hello again everyone

,

Send my best wishes about s annual and also for her starting

school this year. I am sure that she is glad to be going back huh? My

oldest is going to start next year I considered putting him in preschool

but then backed out because Colgan has had such a rough start at thi

ngs. I don't want Max bringing home stuff in addition to Colgan getting

sick I hate to see him sick as well.

Yes Colgan does try to pull out the tube. especially when he is

tired and rubbing his eyes. He feels it there and starts grabbing and

rubbing his nose. Don't know if you remember I am sure you do. How

many times did she reflux during the hour of the test. Colgan did 7

times. Large amounts.

Thanks

[Guest guest]

Gale,

How fun. Did you all have a great Birthday party. I am having a

time keeping up with these posts. Some nights I do not get on until

midnight and then I can only read a few.

My oldes Maxwel is turning 5 October 27 and he has informed me that

he wants a motorcycle. I told him that he had to learn how to ride his

peddle bike without training wheels first. These boys even this young

are trying to kill themselves.

How did Nick like his guitar and amp. I dread that day. I know it

will come I can hear it already. Have fun and buy ear plugs huh!!!

Lots of love to you and your family

How is your grand baby good I hope.!

[Guest guest]

,

" tubie " that is cute. Is it really common for these kids to have

them in for long periods of time? I would assume it was just incase in

the future they developed nutritional problems again

Ashauna

[Guest guest]

that poor little baby 300 times I know you and the Doctor were

just sick about this. I forgot you told me that she would not drink the

medicine. Colgan had a test that took about 70 mins. this was while we

were admitted as well. It was done in nuclear medicine. I can not

remember the name of it right now tooooo late but I am sure you know

what i am talking about.

Does she still struggle with the reflux or did Nissen surgery

fix all of this?

Ashauna

[Guest guest]

Ashauna,

has her tube because even though she eats, it is just not enough. her

weight is at the 50% but her height is around the 75% they would like her

weight and height to match if not they would like her weight to be a bit higher

in % than the height. All just in case she gets sick.

I think that she must be like her Daddy and have a high metabolism too. We

still use the tube. Some kids only need them for a while and then have them

out. Others stop using it but keep it in case they get sick and need nutrition

through it. Lots of times when kids gat sick, they don't want to eat or drink

much, so it comes in handy then. Some just use it occasionally. We use

's 6 times a week for bolus feeds.

Re: Re: hello again everyone

,

" tubie " that is cute. Is it really common for these kids to have

them in for long periods of time? I would assume it was just incase in

the future they developed nutritional problems again

Ashauna

[Guest guest]

Ashauna,

The last time was in the hospital, (late sept. 2000) she " broke through "

her nissan. We tried to take her off the reflux meds last spring but she

developed a cough again. it went away as soon as she went back on the reflux

meds, so that's where we are on that front. Oh, that test in nuclear medicine

was quite an experience! what was that called? a milk scan? something like

that.......

Re: hello again everyone

that poor little baby 300 times I know you and the Doctor were

just sick about this. I forgot you told me that she would not drink the

medicine. Colgan had a test that took about 70 mins. this was while we

were admitted as well. It was done in nuclear medicine. I can not

remember the name of it right now tooooo late but I am sure you know

what i am talking about.

Does she still struggle with the reflux or did Nissen surgery

fix all of this?

Ashauna

[Guest guest]

Thanks ,

I am so ready to get on with this whole process. My little Colgan

is just so small. I know not as small as some but to me he just needs a

lot of weight. I think that I might cry the day that he reaches

anywhere on that chart. Almost 8 months and seems like we are just

working to stay at the step on the hill we are on. Not progressing

anywhere. There are so many aspects of this disease that just make me

want to scream. SO sorry for sounding so negative I am just so worried

about him. I also worry about my oldest to this day he is still only at

the 5th percentile in weight and do you know that these stinking

Military docs will not do anything to help me get weight on him. I have

been begging for 4 years now. Needless to say I have had it with the

poops and the trying to force food down by boys just to get them to

maintain weight forget that part for right now just keep it on is

nearly impossible.

Anyways as you could probably guess I have had a rough day in the

food area.

Love and hugs to you all

Ashauna