caitlyns snottys and rreching

February 8, 2007

i know i am not on this sight much i do try to keep with people but

caitlyn s not been to well since her button was put in 3 weeks ago she

is not managing to keep milk her feeds going she is rechimng all the

time we have to end up switching the machine off after 50mils to 100

mils she is still loosing wieght we have had her on medication to make

the milk go through quicker its not workinh she is full of snots

caughint all the time we have just changed her milk today on to a cows

free milk and we have got a suction machine wich we get loads on

snottys out but things still the same caitlyn is on secretion patches

but dont seem to be working she is going into hospital next fri to be

put under anisetic so they can look up her nose this is not before time

they say she not got chonal artisia but there are other things .caitlyn

had some sort of fit last week to we thought she had dumping syndrome

all the signs are there but they dismissed this i can go on for eva but

i wont bore you all with it anyway i hope the confrence goes well

please keep me in touch thanks rita kellie and caitlyn 14month charger

February 8, 2007

Hi Rita,

What is the rate you are feeding Caitlyn? Some kids just can't handle a fast

rate because their stomach is small (the Nissen makes the stomach smaller and

the g-tube balloon occupies space too), and if you slow down the rate they do

better. We had to very slowly increase Evan's rates as he got bigger (I

remember a time when 70 or 85 mL/hr was too fast for him). Even now if we feed

him too fast he will start gagging and choking.

I am assuming the patch you are talking about for reducing secretions is

scopalamine. Have her doctors tried glycopyrrulate (also called Robinol)? This

worked wonders for Evan. It takes a little experimentation to get the dose

right, because the theraputic dose has a wide range. Too much, and the

secretions thicken so much it's hard to suction. But the right amount really

helps reduce the volume.

It's good they are going to scope her airway. Part of Evan's problem last

summer (he was really sick in the ICU for a week) was that his airway was very

swollen--effectively narrowed--and it was easier for mucus and secretions to

occlude the opening. The swelling could have been partly due to reflux and

partly due to a viral infection (I guess it takes 6 weeks for your airway to

totally recover from one of those). He was put on inhaled steroids for several

months and it helped a lot.

Hang in there. As she gets older (bigger), her airway is going to grow and

snot obstruction becomes less of a concern. Of course I can't crystal-ball it

and tell you she's going to be fine, but if you would have asked me a year ago I

would have thought it a good idea to have Evan's suction machine surgically

attached to my hip, we used it that much. We haven't used it AT ALL in about a

month, and maybe 2-3 times the month before that. We're keeping it for when he

gets sick this winter (keeping fingers crossed this won't happen).

(mom to Evan, 18 months)

ritaskeoch wrote: