NG tube (was Re: meds)

[Guest guest]

Ashauna--how frustrating! Is there any way you can petition to go for a

second opinion at a real CF center? I know you are military, and I can't

remember anymore exactly how that works (my husband comes from a military

family--his dad is still in, Mark used to be). I would think though that

there would be a way--it sounds to me as though you need to see someone else

for a second opinion, and that someone else needs to be a CF specialist at a

certified CF center. I don't know your doc, and can't say how knowledgable

he is, but it's likely he has rarely had to take care of a child with CF, if

ever, and he is just taking a " knowledgable guess " type of approach. Being

a pulmonary doc is good, but he has to remember that CF is not like asthma,

emphysema, allergies, etc.--it is much more complicated, and with Colgan

having reflux and nutritional issues on top of it, that makes it even more

difficult of a case to treat. Give it a try and call to see if you can take

him to see a specialist in CF--it would be worth it!

And I am SOOOOO surprised they didn't teach you how to put the NG tube in!

We also weren't allowed to go home until we were trained in how to insert

it--it's not very difficult, and I know you'd be able to do it yourself. We

did it for about 16 months until Cody had a g-tube placed. They would have

placed the g-tube earlier, but I was new at this whole business, and was

" afraid " of it, but now I look back and wish we'd done it SO much earlier!

Best of luck, and let us know how it goes!

S., mom to Cody (7, pwcf, nissen for severe reflux, malnutrition,

ADHD), DJ (9, nocf, asthma, ADD), and a (14, nocf, ADHD)

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