Parents of Young Adults with DMD

anna (Jun 17, 2009 8:00:23 PM)
(This user has left DigiChat)

momma (Jun 17, 2009 8:06:40 PM)
(This user has entered Parents of Young Adults with DMD)

anna (Jun 17, 2009 8:12:11 PM)
(This user has entered Parents of Young Adults with DMD)

anna (Jun 17, 2009 8:12:22 PM)
Hi Momma

momma (Jun 17, 2009 8:12:45 PM)
hello

anna (Jun 17, 2009 8:12:57 PM)
after I find out how you are I have to go get dinner

anna (Jun 17, 2009 8:13:07 PM)
get home so late thee days

momma (Jun 17, 2009 8:13:16 PM)
yea

momma (Jun 17, 2009 8:13:36 PM)
kents getting new gj tube tommrow afternoon

momma (Jun 17, 2009 8:14:06 PM)
other than that same ole

anna (Jun 17, 2009 8:14:11 PM)
did you ask if he ccould have a Mic-key for that, or not because one is inside the other?

momma (Jun 17, 2009 8:14:38 PM)
yea could do cause he has both

anna (Jun 17, 2009 8:15:13 PM)
? could do? couldn't do?

momma (Jun 17, 2009 8:15:13 PM)
he did say we must of taken good care of tube they rarely last this long

momma (Jun 17, 2009 8:15:28 PM)
oops couldnt

anna (Jun 17, 2009 8:15:32 PM)
ok

momma (Jun 17, 2009 8:16:17 PM)
when R had his replaced did he have to be sedated?

anna (Jun 17, 2009 8:16:22 PM)
whatever works well for you all is good--

momma (Jun 17, 2009 8:16:28 PM)
yes

momma (Jun 17, 2009 8:16:59 PM)
and what did they use to sedate?

anna (Jun 17, 2009 8:17:17 PM)
no, but it was painful as they had to pull out tube with flat base thru hole for Mic-key. but Mic-key is simple to replace with no pain.

anna (Jun 17, 2009 8:17:49 PM)
our friend is sedated, but I forget with what when he has tube changed in ER

momma (Jun 17, 2009 8:18:08 PM)
cause thier gonna use some consious sedation

anna (Jun 17, 2009 8:18:28 PM)
ok, that sounds good if K takes that well

anna (Jun 17, 2009 8:18:59 PM)
I would want cs for it myself. don't know why they didn't for Mic-key.

momma (Jun 17, 2009 8:19:30 PM)
no general and gonna have anthesia personal with him to monitor ox co2 ect..

anna (Jun 17, 2009 8:20:16 PM)
R had Louis with him

momma (Jun 17, 2009 8:20:21 PM)
i requested normal i guess just gi doc and of course nurses all thats needed

momma (Jun 17, 2009 8:20:36 PM)
wish we had someone like him here

anna (Jun 17, 2009 8:20:36 PM)
the problem was the IV of course--

momma (Jun 17, 2009 8:21:04 PM)
yea hopefully have a good nurse tommrow

anna (Jun 17, 2009 8:21:39 PM)
OH--I am getting confused--was talking about initial insertion of tube. for change to Mic-key only the dr that did it was present

momma (Jun 17, 2009 8:22:16 PM)
oh isee

anna (Jun 17, 2009 8:22:25 PM)
old timers

momma (Jun 17, 2009 8:22:48 PM)
lol i hear ya thier sister

anna (Jun 17, 2009 8:22:54 PM)
dr told him it would hurt, and it did

momma (Jun 17, 2009 8:23:26 PM)
yea and kents is down in the bottom hope it all comes out smooth

anna (Jun 17, 2009 8:23:45 PM)
ok, sorry, but got to go get food on. will check bacfk later if I can

momma (Jun 17, 2009 8:23:59 PM)
bye ttyl

anna (Jun 17, 2009 8:24:06 PM)
good luck tomorrow!

momma (Jun 17, 2009 8:24:13 PM)
ty

momma (Jun 17, 2009 8:24:20 PM)
(This user has left DigiChat)

matt-p (Jun 17, 2009 8:29:40 PM)
(This user has entered Parents of Young Adults with DMD)

matt-p (Jun 17, 2009 8:29:57 PM)
hey anna

matt-p (Jun 17, 2009 8:30:05 PM)
how are you

matt-p (Jun 17, 2009 8:31:51 PM)
anna you there

momma (Jun 17, 2009 8:32:20 PM)
(This user has entered Parents of Young Adults with DMD)

matt-p (Jun 17, 2009 8:32:30 PM)
hey momma how are you

momma (Jun 17, 2009 8:32:50 PM)
hi matt doing good here

matt-p (Jun 17, 2009 8:33:02 PM)
good K doin ok

momma (Jun 17, 2009 8:33:25 PM)
i was telling anna he finally getting a new tube tommrow afternoon

momma (Jun 17, 2009 8:33:37 PM)
gj tube that is

matt-p (Jun 17, 2009 8:33:37 PM)
aawww

matt-p (Jun 17, 2009 8:33:51 PM)
hope it go ok for him

momma (Jun 17, 2009 8:34:00 PM)
ty im sure it will

matt-p (Jun 17, 2009 8:34:06 PM)
will they put him under

momma (Jun 17, 2009 8:34:27 PM)
well cosious sedatetion

matt-p (Jun 17, 2009 8:34:39 PM)
lucky

momma (Jun 17, 2009 8:34:53 PM)
not general

momma (Jun 17, 2009 8:35:27 PM)
so whats new with you?

matt-p (Jun 17, 2009 8:35:35 PM)
they had to put me under they tried that for mine and it still hurt and i went ape

momma (Jun 17, 2009 8:35:47 PM)
oh no

matt-p (Jun 17, 2009 8:36:02 PM)
grabing at stuff and all kinds silly stuff they said

momma (Jun 17, 2009 8:36:13 PM)
oh

matt-p (Jun 17, 2009 8:36:23 PM)
thats what they said i did i dont know

matt-p (Jun 17, 2009 8:36:39 PM)
i was feeling pretty loopy

momma (Jun 17, 2009 8:36:40 PM)
kent didnt have trouble before with it so hopefully he will do ok again

matt-p (Jun 17, 2009 8:37:34 PM)
i guess being able to watch and see the tube going in somewhat redisgered and thats what set me off

momma (Jun 17, 2009 8:37:55 PM)
if i skip out tonight is shower night so will have to help i a bit

momma (Jun 17, 2009 8:37:59 PM)
oh i see

matt-p (Jun 17, 2009 8:38:00 PM)
or something i dont know

matt-p (Jun 17, 2009 8:38:21 PM)
all i can go by is what they said when i come to

momma (Jun 17, 2009 8:38:39 PM)
do you use bipap at all?

matt-p (Jun 17, 2009 8:38:39 PM)
like i said i was feeling pretty loopy

momma (Jun 17, 2009 8:38:44 PM)
yea

matt-p (Jun 17, 2009 8:39:01 PM)
dont even know what bipap is

momma (Jun 17, 2009 8:39:12 PM)
oh ok so no lol

momma (Jun 17, 2009 8:39:32 PM)
its a machine to assist breathing

matt-p (Jun 17, 2009 8:39:38 PM)
i would prolly get all bend if they wanted to do that with me

momma (Jun 17, 2009 8:39:42 PM)
kent uses while he sleeps

matt-p (Jun 17, 2009 8:39:50 PM)
oh

matt-p (Jun 17, 2009 8:40:19 PM)
i guess i am lucky in i dont need something like that

momma (Jun 17, 2009 8:40:31 PM)
yes you are

momma (Jun 17, 2009 8:41:04 PM)
but im thankful for these machine kent would be trached with out it

matt-p (Jun 17, 2009 8:41:24 PM)
yes

matt-p (Jun 17, 2009 8:41:39 PM)
sounds pretty easy to deal with

momma (Jun 17, 2009 8:42:34 PM)
kent adapted fast to using it he felt better almost immeditly after trying it

matt-p (Jun 17, 2009 8:43:16 PM)
i wish the one parent that son name Matt would come in so I can tell them i went with feed tube and have it and loveing it

momma (Jun 17, 2009 8:43:17 PM)
dont know if i would do well with it i suppose if i had breathing problems i could adjust

momma (Jun 17, 2009 8:44:04 PM)
hmm ya never know whos comming when or not comming

matt-p (Jun 17, 2009 8:44:38 PM)
i think i had them kinda scared and want to tell them great news

momma (Jun 17, 2009 8:44:50 PM)
oh

momma (Jun 17, 2009 8:45:11 PM)
the unknown is kinda scarey

matt-p (Jun 17, 2009 8:45:16 PM)
yes

matt-p (Jun 17, 2009 8:45:37 PM)
but now wish i would have done it long ago

momma (Jun 17, 2009 8:46:11 PM)
yea

matt-p (Jun 17, 2009 8:46:32 PM)
i did have a little mess this weekend with it but was fixed fast

momma (Jun 17, 2009 8:46:49 PM)
brb

matt-p (Jun 17, 2009 8:47:02 PM)
ok

momma (Jun 17, 2009 8:54:54 PM)
back for a few

matt-p (Jun 17, 2009 8:55:01 PM)
ok

momma (Jun 17, 2009 8:55:25 PM)
have to help with kent getting ready for his shower

matt-p (Jun 17, 2009 8:55:37 PM)
you have any extiteing plans for weekend

matt-p (Jun 17, 2009 8:55:53 PM)
yes

momma (Jun 17, 2009 8:56:01 PM)
nope same ole how about you

matt-p (Jun 17, 2009 8:56:41 PM)
not really we may go to a pull we had tickets gave to us if we dont float away

momma (Jun 17, 2009 8:57:01 PM)
tractor pull?

matt-p (Jun 17, 2009 8:57:10 PM)
yeah

matt-p (Jun 17, 2009 8:57:40 PM)
tractor and truck

momma (Jun 17, 2009 8:57:58 PM)
kent goes to a tractor pull usually in aug through make-a-whis

matt-p (Jun 17, 2009 8:58:01 PM)
2 nights tickets good for both nites

matt-p (Jun 17, 2009 8:58:13 PM)
neat

momma (Jun 17, 2009 8:58:36 PM)
yea to loud for me to enjoy but he like it

matt-p (Jun 17, 2009 8:58:53 PM)
this one is free tickets are nothing more than gas cards to go

momma (Jun 17, 2009 8:59:12 PM)
oh i see

matt-p (Jun 17, 2009 8:59:14 PM)
use ear plugs i have to

momma (Jun 17, 2009 8:59:22 PM)
yeah good idea

matt-p (Jun 17, 2009 8:59:56 PM)
or go to wal mart get a pair them shooters muffs

momma (Jun 17, 2009 9:00:08 PM)
yea

matt-p (Jun 17, 2009 9:00:11 PM)
thats what i have

matt-p (Jun 17, 2009 9:00:31 PM)
ear plugs are like trying to pull teeth

momma (Jun 17, 2009 9:00:43 PM)
i see

matt-p (Jun 17, 2009 9:01:06 PM)
i am ok with ear plugs but the holes in my ears are way smaller than they should be

momma (Jun 17, 2009 9:01:22 PM)
oh i see

matt-p (Jun 17, 2009 9:01:47 PM)
high pitched noise is like 10 times louder than it really is for me

momma (Jun 17, 2009 9:02:06 PM)
like a dog ?

momma (Jun 17, 2009 9:02:17 PM)
dogs hearing is like that

matt-p (Jun 17, 2009 9:02:19 PM)
yup

matt-p (Jun 17, 2009 9:02:35 PM)
guess i must be a mut

momma (Jun 17, 2009 9:02:46 PM)
nah

matt-p (Jun 17, 2009 9:02:48 PM)
lol

matt-p (Jun 17, 2009 9:03:29 PM)
did i tell you about the new fed tax on farmers they are trying to put on the books

momma (Jun 17, 2009 9:03:48 PM)
no

anna (Jun 17, 2009 9:04:33 PM)
yes

anna (Jun 17, 2009 9:04:37 PM)
Hi Matt

matt-p (Jun 17, 2009 9:05:17 PM)
125.50 per head a year milk cows 87.50 per head a year beef cows 25.50 per head a yaer for hogs

matt-p (Jun 17, 2009 9:05:33 PM)
cow fart tax is what it is called

anna (Jun 17, 2009 9:05:34 PM)
were you a farmer Matt?

matt-p (Jun 17, 2009 9:05:49 PM)
i was when i was little

matt-p (Jun 17, 2009 9:06:23 PM)
had it pretty good till i had a stupid attack and not listen to dad

anna (Jun 17, 2009 9:06:36 PM)
tomorrow my car goes back in shop

matt-p (Jun 17, 2009 9:06:42 PM)
aawww

anna (Jun 17, 2009 9:06:53 PM)
the $900 fuel pump didn't fix it

matt-p (Jun 17, 2009 9:06:57 PM)
what year is it

momma (Jun 17, 2009 9:07:09 PM)
oh my that outrageous

anna (Jun 17, 2009 9:07:14 PM)
2000 Caravan

matt-p (Jun 17, 2009 9:07:28 PM)
ah i have the fix for that anna

anna (Jun 17, 2009 9:07:40 PM)
R and I will be on the bus tomorrow

anna (Jun 17, 2009 9:07:47 PM)
coming for us at 0800

anna (Jun 17, 2009 9:07:52 PM)
?

momma (Jun 17, 2009 9:08:09 PM)
loneger than usual day then anna

matt-p (Jun 17, 2009 9:08:42 PM)
my foix is call ins with one stick tnt 1 long fuse 1 pair good running shoes and 1 book matches

anna (Jun 17, 2009 9:09:00 PM)
yes, and I will be on 3 different buses and 2 MS shuttles

matt-p (Jun 17, 2009 9:09:14 PM)
them dang computer cars are for the birds

momma (Jun 17, 2009 9:09:17 PM)
oh boy

anna (Jun 17, 2009 9:09:19 PM)
haha Matt--we need that car

matt-p (Jun 17, 2009 9:09:51 PM)
light fuse and RUN like devil

momma (Jun 17, 2009 9:09:52 PM)
well im gonna have to say goodnight gotta finish up with kent goodnight

anna (Jun 17, 2009 9:10:03 PM)
night Momma ttyl

matt-p (Jun 17, 2009 9:10:06 PM)
good nitte momma

momma (Jun 17, 2009 9:10:11 PM)
night

momma (Jun 17, 2009 9:10:18 PM)
(This user has left DigiChat)

anna (Jun 17, 2009 9:10:19 PM)
good luck tomorrow for K

matt-p (Jun 17, 2009 9:10:23 PM)
you all be safe and good weekend

matt-p (Jun 17, 2009 9:10:36 PM)
and good luck Kent

matt-p (Jun 17, 2009 9:11:42 PM)
anna you rember the one parent that was here when i was all bent about the feed tube i think there son was name matt same as me i think

anna (Jun 17, 2009 9:12:22 PM)
yes, I know them

matt-p (Jun 17, 2009 9:12:53 PM)
was wanting to find a way to get email off to them with a note of thanks again that all is very well with me and new feed tube

anna (Jun 17, 2009 9:13:16 PM)
send it to me and I will forward it to them

anna (Jun 17, 2009 9:13:33 PM)
try Tiger Stew yet?

matt-p (Jun 17, 2009 9:13:35 PM)
oh and loveing the fact that meal toime is not dreaded any more as no chokeing

anna (Jun 17, 2009 9:13:54 PM)
yes, it is helpful for so many

matt-p (Jun 17, 2009 9:14:04 PM)
not yet still trying to get over a minor deal over last weekend

anna (Jun 17, 2009 9:14:20 PM)
R is just getting on WC Gang shortly

matt-p (Jun 17, 2009 9:14:23 PM)
was fixed within one day

anna (Jun 17, 2009 9:14:31 PM)
minor deal? playing poker huh?

matt-p (Jun 17, 2009 9:14:33 PM)
ok cool

matt-p (Jun 17, 2009 9:15:14 PM)
no i all at onece belly decided to have a fit overfr the fourmula i was on

matt-p (Jun 17, 2009 9:15:31 PM)
milk what ever its called

anna (Jun 17, 2009 9:15:47 PM)
did they change the formula? was it Two-Cal?

anna (Jun 17, 2009 9:16:25 PM)
too much gas?

matt-p (Jun 17, 2009 9:16:38 PM)
to much pooin

matt-p (Jun 17, 2009 9:17:06 PM)
was way to loose

anna (Jun 17, 2009 9:17:18 PM)
everyone's body is different so they can try different ones until you find one suited to you

matt-p (Jun 17, 2009 9:17:25 PM)
other than that i was feeling fine

matt-p (Jun 17, 2009 9:17:35 PM)
yep

matt-p (Jun 17, 2009 9:18:01 PM)
went from tnp something to jevic i think it is

matt-p (Jun 17, 2009 9:18:15 PM)
no biggie

anna (Jun 17, 2009 9:18:16 PM)
hope it gets better--Jevity

anna (Jun 17, 2009 9:18:37 PM)
there are 3 in WC Gang now--let's go over there

matt-p (Jun 17, 2009 9:18:41 PM)
i am doing good now just trying to get back what i lost

anna (Jun 17, 2009 9:18:48 PM)
this one is just going to end

anna (Jun 17, 2009 9:18:54 PM)
sounds good

matt-p (Jun 17, 2009 9:18:59 PM)
ok see you there last one roiotten egg

anna (Jun 17, 2009 9:19:07 PM)
(This user has moved to Wheelchair Gang)

matt-p (Jun 17, 2009 9:19:10 PM)
(This user has moved to Wheelchair Gang)

eg (Jun 17, 2009 9:26:41 PM)
(This user has entered Parents of Young Adults with DMD)