Mitochondrial Chat
mylilangel05 (Dec 17, 2007 8:46:55 PM)
mylilangel05 (Dec 17, 2007 8:47:02 PM)
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keuka (Dec 17, 2007 8:48:24 PM)
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keuka (Dec 17, 2007 8:48:27 PM)
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keuka (Dec 17, 2007 8:50:04 PM)
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keuka (Dec 17, 2007 8:50:26 PM)
Hello all. took me a while to get into the chat tonite.
keuka (Dec 17, 2007 8:52:17 PM)
hope we get some people here tonite
lfitzger (Dec 17, 2007 8:54:57 PM)
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keuka (Dec 17, 2007 8:55:05 PM)
Hello Lf.
lfitzger (Dec 17, 2007 8:55:14 PM)
hi keuka
keuka (Dec 17, 2007 8:55:25 PM)
Was beginning to think everyone else was buried in a snow bank!
lfitzger (Dec 17, 2007 8:55:28 PM)
How is the weather in your neck of the woods
lfitzger (Dec 17, 2007 8:55:53 PM)
We got a foot of snow, but all plowed out
keuka (Dec 17, 2007 8:55:55 PM)
we only got a foot of snow....better than the 2 feet they were talking about
keuka (Dec 17, 2007 8:56:15 PM)
Yeah, we are plowed out. I had foot surgery on Friday so I have not been out
lfitzger (Dec 17, 2007 8:56:18 PM)
It sure was pretty looking at it from inside
keuka (Dec 17, 2007 8:56:36 PM)
i agree
lfitzger (Dec 17, 2007 8:56:46 PM)
It sounds like it was good planning. You have to take it easy this way
lfitzger (Dec 17, 2007 8:56:53 PM)
How is the foot?
keuka (Dec 17, 2007 8:57:05 PM)
Am worried about Jenn S. SHe is having real problems with her eyes. Needs a cat scan
mylilangel05 (Dec 17, 2007 8:57:37 PM)
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keuka (Dec 17, 2007 8:57:39 PM)
Foot is fine. No pain. Took a ganglion off the toe. Had to trim a bit of bone. Have 4 or 5 stictches.
lfitzger (Dec 17, 2007 8:57:44 PM)
I talked with her earlier today and she hoped to be here, but didn't know if her eyes would let her.
keuka (Dec 17, 2007 8:57:45 PM)
Hi Mylil.
lfitzger (Dec 17, 2007 8:57:48 PM)
Hi mylil
keuka (Dec 17, 2007 8:57:58 PM)
how is your little one?
melh (Dec 17, 2007 8:57:58 PM)
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keuka (Dec 17, 2007 8:58:05 PM)
Hello Melh
lfitzger (Dec 17, 2007 8:58:05 PM)
Hi mel
mylilangel05 (Dec 17, 2007 8:58:08 PM)
hi keuka and fitz
mylilangel05 (Dec 17, 2007 8:58:12 PM)
hi mel
mylilangel05 (Dec 17, 2007 8:58:16 PM)
soso
keuka (Dec 17, 2007 8:58:20 PM)
How is everyone tonite?
melh (Dec 17, 2007 8:58:23 PM)
hey lil - i made it!
mylilangel05 (Dec 17, 2007 8:58:31 PM)
we are having a huge battle with neuro right now
lfitzger (Dec 17, 2007 8:58:31 PM)
Tired, but good
mylilangel05 (Dec 17, 2007 8:58:39 PM)
good i was just getting ready to call you
melh (Dec 17, 2007 8:58:45 PM)
I think this week was one of the worst since our dx
keuka (Dec 17, 2007 8:58:47 PM)
Glad you are here Mel
lfitzger (Dec 17, 2007 8:58:54 PM)
How so mel?
mylilangel05 (Dec 17, 2007 8:59:03 PM)
hows natlie doing
melh (Dec 17, 2007 8:59:04 PM)
we found out that natalie needs brain surgery on wed
mylilangel05 (Dec 17, 2007 8:59:19 PM)
i have been praying for all of you
keuka (Dec 17, 2007 8:59:19 PM)
what is the battle with the neuro, Mylil?
lfitzger (Dec 17, 2007 8:59:20 PM)
I am so sorry. What is going on?
melh (Dec 17, 2007 8:59:32 PM)
and then they want to hurry and do an NG early this week and a G after xmas
mylilangel05 (Dec 17, 2007 8:59:43 PM)
wow
melh (Dec 17, 2007 8:59:44 PM)
we weren't prepared for any of that!
lfitzger (Dec 17, 2007 9:00:01 PM)
That is alot all at once.
mylilangel05 (Dec 17, 2007 9:00:04 PM)
ng are nasty zack had one for 6 months
keuka (Dec 17, 2007 9:00:06 PM)
Wow, Mel. Why the sudden decision? Did she get worse suddenly
mylilangel05 (Dec 17, 2007 9:00:18 PM)
i hated changing it every 2 weeks
melh (Dec 17, 2007 9:00:19 PM)
shoffner saw on the report from natalies mri (4 years ago ) that she has a chiara malformation
keuka (Dec 17, 2007 9:00:32 PM)
I was not here last week so I may have missed something
melh (Dec 17, 2007 9:00:36 PM)
he wanted us to get a follow-up on it and we did and they said surgery!
melh (Dec 17, 2007 9:00:48 PM)
keuka- not for me this is all new
mylilangel05 (Dec 17, 2007 9:01:11 PM)
keuka zacks is having leg cramps again they up his meds thats fine but they want to take away his sleep med to help him sleep and try melatonin
hoodlum (Dec 17, 2007 9:01:16 PM)
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lfitzger (Dec 17, 2007 9:01:24 PM)
Is it at a dangerous level to want to do surgery right away
keuka (Dec 17, 2007 9:01:28 PM)
I have a cousin whose child they thought had that mel. They are treating him with meds.
lfitzger (Dec 17, 2007 9:01:35 PM)
Hi hood - snowed in your way?
keuka (Dec 17, 2007 9:01:39 PM)
Hello Hood. how are you
hoodlum (Dec 17, 2007 9:01:47 PM)
Hi everyone...
mylilangel05 (Dec 17, 2007 9:02:00 PM)
we tried the melatoin 6mg and he screamed all night so called the next day they said to try it ofr a week
hoodlum (Dec 17, 2007 9:02:05 PM)
a little lf, but nothing like the ice we got over the weekend.
keuka (Dec 17, 2007 9:02:18 PM)
Have you tried the melitonian (sic) before, mylil
lfitzger (Dec 17, 2007 9:02:19 PM)
That's good.
hoodlum (Dec 17, 2007 9:02:21 PM)
I'm doing okay keuka... how about yoU?
melh (Dec 17, 2007 9:02:43 PM)
some of you may remember that natalie had her first swallow study 11/23 and it shows that she is aspirating. we tried thickeners for three days and she dehydrated and so went back to reg. liquids until GI got back with ped. Well evidently it happened on Friday (2 weeks later) and everyone freaked out!
keuka (Dec 17, 2007 9:02:52 PM)
what does his ped. say?
mylilangel05 (Dec 17, 2007 9:02:57 PM)
we tried it until thrus and he kept doing it so we took him off of it and gave him back his bendryl iv
mylilangel05 (Dec 17, 2007 9:03:41 PM)
called nero to let them know what i did and they called me friday night and said to try this weekend
lfitzger (Dec 17, 2007 9:03:43 PM)
Is that the reason for the NG tube, mel?
keuka (Dec 17, 2007 9:04:01 PM)
Mylil, those who do not have to hear the screams have no idea the heartbreak is causes...not to mention the pain he is in.
hoodlum (Dec 17, 2007 9:04:04 PM)
I HATE nose hoses!!!!
melh (Dec 17, 2007 9:04:13 PM)
yes, they don't want her to be in the hospital over christmas for a g tube placement
melh (Dec 17, 2007 9:04:24 PM)
we are NOT doing the NG
keuka (Dec 17, 2007 9:04:34 PM)
with the short staffs you do not want her in either
mylilangel05 (Dec 17, 2007 9:04:41 PM)
tired it sat he did the same thing so i vented him cause his stomache was destended and at 1 am i got all fo his meltonin back and i gave it at 6pm
hoodlum (Dec 17, 2007 9:04:49 PM)
its also usual protocol to do NG trial to see if the stomach will tolerate feeds otherwise you look at J tube placement.
melh (Dec 17, 2007 9:04:49 PM)
I called our ped today to tell him we would do iv hydration until the G if that is still necessary
keuka (Dec 17, 2007 9:05:29 PM)
what did he say, mehl?
melh (Dec 17, 2007 9:05:40 PM)
he didn't call back
keuka (Dec 17, 2007 9:05:47 PM)
Grrrr
melh (Dec 17, 2007 9:05:50 PM)
interesting too b/c her intake is way down!
mylilangel05 (Dec 17, 2007 9:05:55 PM)
so i called them today and told them what happened they were suppose to get a hodl of me today and never did im just fed up with neuro
melh (Dec 17, 2007 9:05:59 PM)
he is really good and supportive
mylilangel05 (Dec 17, 2007 9:06:17 PM)
so sorry to hear what been going on mel
melh (Dec 17, 2007 9:06:24 PM)
stinks!
melh (Dec 17, 2007 9:06:31 PM)
Ready for some good news!
mylilangel05 (Dec 17, 2007 9:06:35 PM)
im glad you have the support you need
mylilangel05 (Dec 17, 2007 9:06:37 PM)
yes
keuka (Dec 17, 2007 9:06:37 PM)
YES
lfitzger (Dec 17, 2007 9:06:39 PM)
Sure am
hoodlum (Dec 17, 2007 9:06:43 PM)
definitely
melh (Dec 17, 2007 9:06:47 PM)
I put in for my family medical leave act as of Jan 2nd!!
keuka (Dec 17, 2007 9:06:59 PM)
yeah,
mylilangel05 (Dec 17, 2007 9:07:09 PM)
alright
melh (Dec 17, 2007 9:07:16 PM)
Whew!! I did it! It is done. I don't know how we will pay bills, but I just have to rely on God for that
lfitzger (Dec 17, 2007 9:07:19 PM)
Way to go
keuka (Dec 17, 2007 9:07:25 PM)
how long will you get
melh (Dec 17, 2007 9:07:50 PM)
my work is awesome, i think I can have up to a year, though I usually never can stay gone that long
mylilangel05 (Dec 17, 2007 9:08:03 PM)
thats great news
melh (Dec 17, 2007 9:08:37 PM)
last week someone here, maybe you are here now?? set me up with an Angel to help with Natalie's IEP
melh (Dec 17, 2007 9:08:42 PM)
Thank you so much!!
mylilangel05 (Dec 17, 2007 9:08:56 PM)
has any body been fighting with insurance about nursing care
hoodlum (Dec 17, 2007 9:08:58 PM)
I think that was EMT???
keuka (Dec 17, 2007 9:09:03 PM)
Did the angel help, Melh?
mylilangel05 (Dec 17, 2007 9:09:06 PM)
yea she not on righit now
melh (Dec 17, 2007 9:09:06 PM)
yeah, hood, emt!
melh (Dec 17, 2007 9:09:44 PM)
she is helping us so much!! with the iep!! Right now I just don't trust her saftey at school.
keuka (Dec 17, 2007 9:10:07 PM)
mylil, have you had nursing care in the past?
mylilangel05 (Dec 17, 2007 9:10:15 PM)
zack gets 2 day of nursing for 2 hours on monday and 2 hours on thrusdday
mylilangel05 (Dec 17, 2007 9:10:30 PM)
they wantto decrease his nursing to 1 day a week
melh (Dec 17, 2007 9:10:38 PM)
nursing care... we just started three weeks ago with a home health aide. soon our waiver should go through and we will be looking more into that
mylilangel05 (Dec 17, 2007 9:10:40 PM)
just to come in and draw labs
keuka (Dec 17, 2007 9:10:52 PM)
it is a good break for you. Why do they waant to cut it back?
mylilangel05 (Dec 17, 2007 9:11:04 PM)
cause they say he dont need it
melh (Dec 17, 2007 9:11:11 PM)
we did have nursing care when natalie was younger for my working hours
keuka (Dec 17, 2007 9:11:25 PM)
What does the nurse do while she is there?
melh (Dec 17, 2007 9:11:30 PM)
my lil - I know you are not sleeping! You need it!!
melh (Dec 17, 2007 9:11:40 PM)
brb med time
mylilangel05 (Dec 17, 2007 9:11:58 PM)
remind you he has a broviac and the nurse comes in changes dressing and helps with baths and make sure its not infected
keuka (Dec 17, 2007 9:12:14 PM)
Sounds necessary to me.
hoodlum (Dec 17, 2007 9:12:30 PM)
nursing should teach you those skills...
mylilangel05 (Dec 17, 2007 9:12:35 PM)
yea very cause he has already had 1 infection in his broviac where they had to pull it
hoodlum (Dec 17, 2007 9:12:36 PM)
I have to do all my own line care
mylilangel05 (Dec 17, 2007 9:12:40 PM)
i do them
mylilangel05 (Dec 17, 2007 9:13:13 PM)
everyday cause of how much he goes into a cold sweat
lfitzger (Dec 17, 2007 9:13:29 PM)
That way you know it has been done correctly hood
keuka (Dec 17, 2007 9:13:36 PM)
But little ones are hard enough to bathe when they are healthy. Trying not to get things wet is not easy with little ones.
mylilangel05 (Dec 17, 2007 9:13:48 PM)
thank goodness we have a fanstaic gi dr and nurse that takes care of it
hoodlum (Dec 17, 2007 9:14:03 PM)
yes, in fact most of my docs now know that it is safer for me to manage my own care at home or hosp if at all possible.
lkommer (Dec 17, 2007 9:14:14 PM)
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hoodlum (Dec 17, 2007 9:14:22 PM)
you can get broviac wet...
mylilangel05 (Dec 17, 2007 9:14:36 PM)
they dont want me to get it wet at all
hoodlum (Dec 17, 2007 9:14:38 PM)
you just have to watch the dressings.
keuka (Dec 17, 2007 9:14:43 PM)
as a adult that is the way to go....like investing...who cares more for you and your care then you yourself
hoodlum (Dec 17, 2007 9:14:45 PM)
why is that mylil?
mylilangel05 (Dec 17, 2007 9:14:56 PM)
i dotn know
keuka (Dec 17, 2007 9:14:58 PM)
Hello Lkommer
lfitzger (Dec 17, 2007 9:15:03 PM)
hi lk
mylilangel05 (Dec 17, 2007 9:15:07 PM)
they said absolutly to not get it wet
hoodlum (Dec 17, 2007 9:15:09 PM)
hi lkommer...
mylilangel05 (Dec 17, 2007 9:15:11 PM)
hi larissa
hoodlum (Dec 17, 2007 9:15:16 PM)
I would want to know why.
lkommer (Dec 17, 2007 9:15:17 PM)
hello
keuka (Dec 17, 2007 9:15:32 PM)
how are you doing, lk?
Jennifer-S (Dec 17, 2007 9:15:40 PM)
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lfitzger (Dec 17, 2007 9:15:41 PM)
I had students with broviacs who showered all the time.
hoodlum (Dec 17, 2007 9:15:46 PM)
initially when a new line is placed they tell me 3 weeks to 3 months no wet (ie showers...)
mylilangel05 (Dec 17, 2007 9:15:46 PM)
hi jenn
lfitzger (Dec 17, 2007 9:15:46 PM)
Hi jenn
lkommer (Dec 17, 2007 9:15:48 PM)
ok how about you
keuka (Dec 17, 2007 9:16:09 PM)
Hello Jenn!! Glad you could make it
hoodlum (Dec 17, 2007 9:16:17 PM)
BUT... after that once the cuff has adheared there isn't an issue and it shouldn't interfere with normal developmental activities
mylilangel05 (Dec 17, 2007 9:16:25 PM)
his GI dr wants 2 days of nursing in here cause he so high risk fro infections
hoodlum (Dec 17, 2007 9:16:31 PM)
Hey Jenn... great to see you!
Jennifer-S (Dec 17, 2007 9:16:37 PM)
hi guys. i'm not staying long but wanted to say hi
mylilangel05 (Dec 17, 2007 9:16:50 PM)
how is everything going jenn
keuka (Dec 17, 2007 9:16:50 PM)
Then have the doc go to bat for you, mylil
lfitzger (Dec 17, 2007 9:16:55 PM)
Glad to be able to say hi
melh (Dec 17, 2007 9:17:00 PM)
they told one of our local ladies with mito and a port that she could not do it herself because it would not be a sterile procedure if she breathes on it
mylilangel05 (Dec 17, 2007 9:17:03 PM)
yea called them the nurse is calling tomorrow
hoodlum (Dec 17, 2007 9:22:57 PM)
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Jennifer-S (Dec 17, 2007 9:22:57 PM)
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Jennifer-S (Dec 17, 2007 9:23:07 PM)
i got booted
hoodlum (Dec 17, 2007 9:23:11 PM)
I guess we all got booted!!!
Jennifer-S (Dec 17, 2007 9:23:29 PM)
oh i tought it was just me
melh (Dec 17, 2007 9:23:29 PM)
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mylilangel05 (Dec 17, 2007 9:23:34 PM)
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lfitzger (Dec 17, 2007 9:23:37 PM)
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Jennifer-S (Dec 17, 2007 9:23:43 PM)
whats with digichat lately
mylilangel05 (Dec 17, 2007 9:23:46 PM)
what happened
hoodlum (Dec 17, 2007 9:23:48 PM)
wb everyone... the whole room got booted... lol
melh (Dec 17, 2007 9:23:51 PM)
kicked off, you too, so i didn't miss anything?
riley04 (Dec 17, 2007 9:24:03 PM)
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hoodlum (Dec 17, 2007 9:24:12 PM)
hi riley...
mylilangel05 (Dec 17, 2007 9:24:12 PM)
hi riley
melh (Dec 17, 2007 9:24:17 PM)
that is weird it kept my coloful jelly beans
keuka (Dec 17, 2007 9:24:23 PM)
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lfitzger (Dec 17, 2007 9:24:25 PM)
Well, that was interesting
mylilangel05 (Dec 17, 2007 9:24:27 PM)
yea
lfitzger (Dec 17, 2007 9:24:31 PM)
hi riley
hoodlum (Dec 17, 2007 9:24:33 PM)
I thought they werejellybeans...lol
keuka (Dec 17, 2007 9:24:43 PM)
sorry, I got bounced
hoodlum (Dec 17, 2007 9:24:50 PM)
we all did keuka...
melh (Dec 17, 2007 9:24:50 PM)
any ideas for the mom that is not geting her tpn b/c of her daughers hospitlzations
riley04 (Dec 17, 2007 9:24:51 PM)
hi lf hi to everyone
keuka (Dec 17, 2007 9:24:53 PM)
Hello Riley
riley04 (Dec 17, 2007 9:25:14 PM)
hi keuka how are you
Jennifer-S (Dec 17, 2007 9:25:34 PM)
have any of you had eye or head pain that felt like ice pick stabbing and if so what did the doctor call it and what did you do for it
hoodlum (Dec 17, 2007 9:25:35 PM)
is it really tpn or iv hydration... there is a BIG difference and tpn is medically necessary and should b given to her in the hosp while she is with her daughter... the doc just needs to order it.
riley04 (Dec 17, 2007 9:25:35 PM)
hey hood how are you doing?
keuka (Dec 17, 2007 9:25:43 PM)
i am just fine...foot surgery went well
hoodlum (Dec 17, 2007 9:25:52 PM)
hanging in there riley...thanks.
keuka (Dec 17, 2007 9:26:04 PM)
How is your son, Riley
riley04 (Dec 17, 2007 9:26:05 PM)
glad to hear that keuka
melh (Dec 17, 2007 9:26:28 PM)
she gets hydration AND tpn! tpn three times a week at least and hydration the other days if needed
lfitzger (Dec 17, 2007 9:26:43 PM)
Jenn - we have talked, but you didn't mention the head pain. I get that. My doc calls it neuropathy
hoodlum (Dec 17, 2007 9:26:50 PM)
I may loose days of hydration but if we loose power or something I HAVE to be admitted for TPN
hoodlum (Dec 17, 2007 9:27:15 PM)
I don't know why her doc wouldn't order it for her in the hospital.
Jennifer-S (Dec 17, 2007 9:27:31 PM)
the head pain is just around my eyes usually
hoodlum (Dec 17, 2007 9:27:41 PM)
Or why her supplies couldn't be delivered to the hospital...
lfitzger (Dec 17, 2007 9:27:44 PM)
Mine is in the temple region
keuka (Dec 17, 2007 9:27:48 PM)
is this different this time, Jenn
riley04 (Dec 17, 2007 9:27:52 PM)
a little better thank you I had the stomach flu last week than my husband and daughter got it in sat my daughter is still not good my poor son is some what hanging out in his room he is scared he will get it and that will be an automatic admission
melh (Dec 17, 2007 9:28:14 PM)
her dr office supposedly is the only one who has the right needles to access it . does that sound right?
Jennifer-S (Dec 17, 2007 9:28:19 PM)
its more severe keuka
hoodlum (Dec 17, 2007 9:28:27 PM)
NO... that does not sound right...
melh (Dec 17, 2007 9:28:34 PM)
riley- my son is the same way - hiding away
keuka (Dec 17, 2007 9:28:37 PM)
time to get it checked out then
hoodlum (Dec 17, 2007 9:28:58 PM)
she can buy her own huber needles right off the internet, but her infusion company SHOULD be providing HER with all her equipment and supply needs.
riley04 (Dec 17, 2007 9:28:58 PM)
he called from his room tonight via cell phone
Jennifer-S (Dec 17, 2007 9:29:15 PM)
i couldn't get a ride today...hopefully tomorrow
hoodlum (Dec 17, 2007 9:29:16 PM)
that is sad riley, but I do the same... lol
keuka (Dec 17, 2007 9:29:17 PM)
hey, he's got a good brain there, Riley
lfitzger (Dec 17, 2007 9:29:27 PM)
riley 0 lol
riley04 (Dec 17, 2007 9:29:36 PM)
yeah and maid service lol
keuka (Dec 17, 2007 9:29:40 PM)
that is the way to stay out of harms way for him
Jennifer-S (Dec 17, 2007 9:29:46 PM)
that was smart of him
riley04 (Dec 17, 2007 9:30:24 PM)
I keep bleaching and lysoling every thing I am still not right I came home from work sick today
riley04 (Dec 17, 2007 9:30:50 PM)
and we are constantly washing our hands
mylilangel05 (Dec 17, 2007 9:31:05 PM)
sounds like us here
riley04 (Dec 17, 2007 9:31:12 PM)
brb
keuka (Dec 17, 2007 9:31:35 PM)
Just keep using that stuff....would be worse without it
mylilangel05 (Dec 17, 2007 9:31:55 PM)
you walk in and find germ x all over the house
Jennifer-S (Dec 17, 2007 9:32:17 PM)
i've got to go guys. the screen is too bright...have a great week
keuka (Dec 17, 2007 9:32:29 PM)
take care. Hope they find the problem
Jennifer-S (Dec 17, 2007 9:32:32 PM)
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hoodlum (Dec 17, 2007 9:33:18 PM)
melh I'm going to pm you my email... please have this woman email me privately.
melh (Dec 17, 2007 9:34:15 PM)
that would be super because I just don't know how to help her
keuka (Dec 17, 2007 9:34:52 PM)
she has to stay in contact with her doc....or her child's doc must know her history too....
hoodlum (Dec 17, 2007 9:34:57 PM)
you should have it by now.
keuka (Dec 17, 2007 9:36:33 PM)
Riley are you back?
keuka (Dec 17, 2007 9:37:17 PM)
Do most of you get flu shots?
lfitzger (Dec 17, 2007 9:37:34 PM)
Always keuka
hoodlum (Dec 17, 2007 9:37:52 PM)
every year and then some...
mylilangel05 (Dec 17, 2007 9:38:05 PM)
zack does
keuka (Dec 17, 2007 9:38:06 PM)
yeah, me too. but have not had the flu for the last few years....fortunately
hoodlum (Dec 17, 2007 9:38:07 PM)
meaning some years I end up getting an end of season booster...
melh (Dec 17, 2007 9:38:09 PM)
I got a flu shot this year and has a bad reaction! swollen all over for two weeks and SO SORE!! but i've never had a prob before
hoodlum (Dec 17, 2007 9:38:35 PM)
I wonder if you were exposed to something before hand melh.
mylilangel05 (Dec 17, 2007 9:38:35 PM)
i always get sicker when i get th eflu shot
lfitzger (Dec 17, 2007 9:38:47 PM)
That happened to me one year mel, but never again
keuka (Dec 17, 2007 9:40:25 PM)
i have not had a bad reaction so far
mylilangel05 (Dec 17, 2007 9:40:44 PM)
brb zacks up
mylilangel05 (Dec 17, 2007 9:40:48 PM)
have to suction
mylilangel05 (Dec 17, 2007 9:42:37 PM)
ok back
hoodlum (Dec 17, 2007 9:43:00 PM)
boy u are quick mylil...
hoodlum (Dec 17, 2007 9:43:09 PM)
takes me longer than that to suction...
keuka (Dec 17, 2007 9:43:17 PM)
speedy, mylil
melh (Dec 17, 2007 9:43:46 PM)
here is one for you! of course we have not talked about the g tube around nat, but we had a month or so ago
mylilangel05 (Dec 17, 2007 9:43:46 PM)
yea he went righ tback to sleep he pushes it away when he thinks im done lol
hoodlum (Dec 17, 2007 9:44:07 PM)
awwww.
melh (Dec 17, 2007 9:44:34 PM)
tonight we got some saftey stuff in the mail from my husbands work in case there is a flu epidemic... natalie saw it and went and told her brother that it was to put the hole in her stomach!
melh (Dec 17, 2007 9:44:40 PM)
I just can't stand it!
mylilangel05 (Dec 17, 2007 9:44:47 PM)
it usually takes longer but he fell asleep its cute as soon as he hears the machine running he opens his mouth for it lol
melh (Dec 17, 2007 9:45:02 PM)
i bet she was scared! and i wasn't here then either
keuka (Dec 17, 2007 9:45:08 PM)
Mehl, how old is Natalie
hoodlum (Dec 17, 2007 9:45:11 PM)
wow... that is great mylil
melh (Dec 17, 2007 9:45:14 PM)
6 1/2
hoodlum (Dec 17, 2007 9:45:34 PM)
maybe not melh... sounds like she has a bit of understanding about what may be happening to her.
melh (Dec 17, 2007 9:45:38 PM)
natalie reaches up for the neb mask when she hears it go on in the middle of the night
keuka (Dec 17, 2007 9:45:46 PM)
ah, old enough to understand. And to know it would make her different
hoodlum (Dec 17, 2007 9:46:05 PM)
AND when your tummy doesn't work you want so badly for some relief that a hole in your stomach actually sounds good.
lfitzger (Dec 17, 2007 9:46:09 PM)
Natalie may be more accepting than you think
keuka (Dec 17, 2007 9:46:15 PM)
Nebs are good. Daughter is an asthmatic
melh (Dec 17, 2007 9:46:23 PM)
we stayed with lnhiggins in atlanta and natalie got to see her daughers g tube and how it works, Natalie said, "I want one!"
melh (Dec 17, 2007 9:46:31 PM)
and she didn't even know it was in teh works!
lfitzger (Dec 17, 2007 9:46:52 PM)
She wants to feel better
mylilangel05 (Dec 17, 2007 9:47:00 PM)
thats good it might make her feel better
hoodlum (Dec 17, 2007 9:47:02 PM)
that is what I think too lf
melh (Dec 17, 2007 9:47:05 PM)
ive heard that it can make them not interested in eating any more if we place a g? any ideas?
mylilangel05 (Dec 17, 2007 9:47:19 PM)
zack wants to eat
lfitzger (Dec 17, 2007 9:47:25 PM)
That is a neat age - they understand and are okay with things
mylilangel05 (Dec 17, 2007 9:47:29 PM)
he beggs for food but he cant have any at all
hoodlum (Dec 17, 2007 9:47:32 PM)
don't worry about it and don't project... let her tell you what she is up for and when
melh (Dec 17, 2007 9:47:41 PM)
they are talking for liquids for hydration right now, but she is aspirtaing, but has been for 6 years
melh (Dec 17, 2007 9:48:26 PM)
it is interesting b/c they are letting her have h2o for now with no thickener between meals. they said b/c it is found naturally in our systems it is not as dangerous
mylilangel05 (Dec 17, 2007 9:48:29 PM)
his gi tract is not empting at all so everything sits there i feel so bad when he beggs for food and i cant give him any
riley04 (Dec 17, 2007 9:48:40 PM)
i'm back
mylilangel05 (Dec 17, 2007 9:48:51 PM)
wb riley
hoodlum (Dec 17, 2007 9:49:36 PM)
mylil I have the same issue... but I still indulge especially socially... that is where the T/J tube comes in handy for me b/c I can vent it all out later and not have to worry about it, but I still get to "exercise my taste buds"
melh (Dec 17, 2007 9:50:06 PM)
natalie was extra sick when she was on formula, and then this past year too with extra bad lung stuff again. I told her ped that maybe it was because she only drank water from age three to 6 and now she drinks gatorade too
mylilangel05 (Dec 17, 2007 9:50:17 PM)
i do give really little bitty bites of bread so he wont choke
keuka (Dec 17, 2007 9:50:21 PM)
Glad you can help Hood. I do not have any experience iwth this
lfitzger (Dec 17, 2007 9:50:28 PM)
I'm going to say goodnight and climb into bed - falling asleep at the keyboard
mylilangel05 (Dec 17, 2007 9:50:48 PM)
by fitz have a wonderful holiday
hoodlum (Dec 17, 2007 9:50:54 PM)
nite lf... have a great week... remember no chat next week...
keuka (Dec 17, 2007 9:50:57 PM)
Nite L
keuka (Dec 17, 2007 9:51:15 PM)
Thanks for the reminder about next week
hoodlum (Dec 17, 2007 9:51:22 PM)
np
lfitzger (Dec 17, 2007 9:51:27 PM)
I hope all have a good holiday. Remember that we won't chat the next 2 Mon due to holidays
lfitzger (Dec 17, 2007 9:51:36 PM)
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melh (Dec 17, 2007 9:52:08 PM)
has anyone tried the chocolate molten cake that you add water too and microwave from duncan hines??
melh (Dec 17, 2007 9:52:15 PM)
it is such a treat!
mylilangel05 (Dec 17, 2007 9:52:17 PM)
yea its good
keuka (Dec 17, 2007 9:52:25 PM)
My daughter likes it
mylilangel05 (Dec 17, 2007 9:52:28 PM)
did it when zack was in the hosptial
keuka (Dec 17, 2007 9:52:43 PM)
ANd she is not a sweet eater....normally
keuka (Dec 17, 2007 9:53:32 PM)
are people traveling for the holiday?
melh (Dec 17, 2007 9:53:34 PM)
i'm getting my friends and family the cakes for xmas - lol
mylilangel05 (Dec 17, 2007 9:53:44 PM)
yes we are
hoodlum (Dec 17, 2007 9:53:48 PM)
lol
melh (Dec 17, 2007 9:53:49 PM)
oh ya keuka!!!! that was one of my main questions!!!!!!!!!!
mylilangel05 (Dec 17, 2007 9:53:54 PM)
not lookign forward to it
hoodlum (Dec 17, 2007 9:53:56 PM)
nope...staying put here
keuka (Dec 17, 2007 9:54:01 PM)
do you have to far, MYlil
mylilangel05 (Dec 17, 2007 9:54:08 PM)
having to drag all his equippment out
keuka (Dec 17, 2007 9:54:13 PM)
I am staying put too.
riley04 (Dec 17, 2007 9:54:14 PM)
I also would like to wish everyone a very Merry Christmas and a Happy and healthly New Year
melh (Dec 17, 2007 9:54:22 PM)
I am planning to leave on teh 26th to go to a leading hospital for children that understands mito for a second opions
keuka (Dec 17, 2007 9:54:27 PM)
The very same to you and yours Riley
mylilangel05 (Dec 17, 2007 9:54:30 PM)
one 2 and half hours away and mon 1 and half hours away
melh (Dec 17, 2007 9:54:54 PM)
any ideas where to go??
keuka (Dec 17, 2007 9:55:03 PM)
Hope you hear good things Mehl
mylilangel05 (Dec 17, 2007 9:55:04 PM)
its goign to take a tole on him
hoodlum (Dec 17, 2007 9:55:07 PM)
that is onne reason to stay put... vent, concentrator, extra O2, pumps, IV poles, meds, tpn, IV hydration all the equipment and supplies that go alongg... need a Uhaul just for my stuff.
mylilangel05 (Dec 17, 2007 9:55:19 PM)
yea
hoodlum (Dec 17, 2007 9:55:28 PM)
thanks riley... you too!
melh (Dec 17, 2007 9:55:35 PM)
my question is - where should we go??
keuka (Dec 17, 2007 9:55:40 PM)
Will you have help at the places you are going, Mylil
melh (Dec 17, 2007 9:55:48 PM)
we need a good pulm, gi and neurosurgeon
mylilangel05 (Dec 17, 2007 9:55:55 PM)
my husban going
mylilangel05 (Dec 17, 2007 9:55:58 PM)
brb
melh (Dec 17, 2007 9:56:03 PM)
they want to do surgery for g tube and brain surgery soon
riley04 (Dec 17, 2007 9:56:12 PM)
does anyone know when the mito conferance will be comming to cleveland and where is it in 2008
keuka (Dec 17, 2007 9:56:19 PM)
I agree Hood. Easier to stay put
hoodlum (Dec 17, 2007 9:56:42 PM)
I'm not sure riley... I don't seem to be getting my newsletters anymore...
mylilangel05 (Dec 17, 2007 9:56:50 PM)
ok back
hoodlum (Dec 17, 2007 9:56:58 PM)
wb mylil
keuka (Dec 17, 2007 9:57:02 PM)
welcome
mylilangel05 (Dec 17, 2007 9:57:06 PM)
ty
riley04 (Dec 17, 2007 9:57:13 PM)
ok thanks hood
hoodlum (Dec 17, 2007 9:57:30 PM)
the website would probably have the info...
mylilangel05 (Dec 17, 2007 9:57:33 PM)
we will be gone from 8 in the mornign sun to 8 at night sunday night
melh (Dec 17, 2007 9:57:35 PM)
any ideas on where to go? I am thinking duPont, or CHOP or CHOA
hoodlum (Dec 17, 2007 9:57:36 PM)
at least for this years.
hoodlum (Dec 17, 2007 9:57:47 PM)
where do you live melh?
mylilangel05 (Dec 17, 2007 9:57:50 PM)
then leave around 9 to il mon and come home around 10
keuka (Dec 17, 2007 9:58:23 PM)
long days, mylil
mylilangel05 (Dec 17, 2007 9:58:27 PM)
yea
hoodlum (Dec 17, 2007 9:58:50 PM)
are you visiting family mylil?
mylilangel05 (Dec 17, 2007 9:58:53 PM)
emt is getting in contact with me with dr gropman
mylilangel05 (Dec 17, 2007 9:58:55 PM)
yea
melh (Dec 17, 2007 9:59:03 PM)
South bend, northern Indiana
mylilangel05 (Dec 17, 2007 9:59:05 PM)
in washington dc
hoodlum (Dec 17, 2007 9:59:20 PM)
gropman's in MD/VA
melh (Dec 17, 2007 9:59:37 PM)
you guys hear that kendall left shoffner's office
keuka (Dec 17, 2007 9:59:49 PM)
Who is kendall?
melh (Dec 17, 2007 9:59:52 PM)
just when we were established and needing info!!
keuka (Dec 17, 2007 9:59:58 PM)
Where did he go?
melh (Dec 17, 2007 10:00:03 PM)
she was working with shoffner doing followups etc
melh (Dec 17, 2007 10:00:23 PM)
he is still there I think, though I saw that maybe HMM is being dissolved???
hoodlum (Dec 17, 2007 10:00:27 PM)
mylil are you in the MD/VA area???
mylilangel05 (Dec 17, 2007 10:00:38 PM)
no im in stlouis mo
hoodlum (Dec 17, 2007 10:00:41 PM)
HMM???
keuka (Dec 17, 2007 10:00:50 PM)
HMM being disolved?
hoodlum (Dec 17, 2007 10:01:03 PM)
okay.. but you are wanting to see Gropman???
melh (Dec 17, 2007 10:01:09 PM)
horizon molecular medicine (where shoffner works out of)
mylilangel05 (Dec 17, 2007 10:01:20 PM)
sounds like she knows her stuff
keuka (Dec 17, 2007 10:01:22 PM)
whoa...that would be news
hoodlum (Dec 17, 2007 10:01:23 PM)
That is just the lab isn't it?
melh (Dec 17, 2007 10:01:24 PM)
it was on the mito site
hoodlum (Dec 17, 2007 10:01:42 PM)
I believe the lab was funded separately by grant
mylilangel05 (Dec 17, 2007 10:01:48 PM)
emt has talked to her about zack and she wants to see him
melh (Dec 17, 2007 10:01:53 PM)
maybe I really don't know
hoodlum (Dec 17, 2007 10:01:59 PM)
perhapsScottish Rite is picking up the bill.
mylilangel05 (Dec 17, 2007 10:02:21 PM)
we are getting no where with our neuro
mylilangel05 (Dec 17, 2007 10:02:29 PM)
he has no idea about mito
melh (Dec 17, 2007 10:02:29 PM)
all I know is I was talking to them regarding brain surgery for natalie on thursday and friday when I was supposed to call back, no one is there
keuka (Dec 17, 2007 10:02:34 PM)
I am obviously not keeping up well this last 6 weeks or so
hoodlum (Dec 17, 2007 10:02:34 PM)
that is a long way to come, and I'd question why and what she could offer (speaking from experience).
keuka (Dec 17, 2007 10:02:56 PM)
Did shoffner help you at all Hood?
hoodlum (Dec 17, 2007 10:03:01 PM)
If you go back in our MDA Mito transcripts (WAY BACK) you can find an expert chat with her.
mylilangel05 (Dec 17, 2007 10:03:09 PM)
ok
hoodlum (Dec 17, 2007 10:03:12 PM)
not directly keuka.
mylilangel05 (Dec 17, 2007 10:03:21 PM)
how do i go back to look at the chats
keuka (Dec 17, 2007 10:03:38 PM)
I got my results back from the skin biopsy....basically normal.
melh (Dec 17, 2007 10:03:51 PM)
btw, wanted to make sure you guys know that this is all "hear say" on my part from the mito board. just wanted to know if anyone here knew of any details or truth to it
hoodlum (Dec 17, 2007 10:04:04 PM)
the link is on the sign in page and then when you get to transcripts they are listed by chat and by year and some by expert chat...
keuka (Dec 17, 2007 10:04:09 PM)
Some alcartitine (sic) results not normal
mylilangel05 (Dec 17, 2007 10:04:13 PM)
ok
mylilangel05 (Dec 17, 2007 10:04:15 PM)
ty
hoodlum (Dec 17, 2007 10:04:44 PM)
not at all unusual for skin biopsy to be "basically normal"...
mylilangel05 (Dec 17, 2007 10:04:54 PM)
how much cq is everybody on and carintine
hoodlum (Dec 17, 2007 10:05:08 PM)
only very small percentage of mito issues can be dxd from skin biopsy...
keuka (Dec 17, 2007 10:05:14 PM)
i am just tired of tests and basically normal.....4 years of it
mylilangel05 (Dec 17, 2007 10:05:30 PM)
zack is on cq 10 30 mg 1 time a day and carintine 150 mg in tpn
hoodlum (Dec 17, 2007 10:05:32 PM)
that is totally understandable...keuka...
keuka (Dec 17, 2007 10:06:07 PM)
I am going on it after the holidays. Had to given my PCP the formula. He only wanted me to take 150 mg of CoQ10
keuka (Dec 17, 2007 10:06:30 PM)
Anyone had taurine tested?
hoodlum (Dec 17, 2007 10:06:31 PM)
you will probably end up 10x that amount
hoodlum (Dec 17, 2007 10:06:49 PM)
you name it I've had it tested...lol
keuka (Dec 17, 2007 10:06:53 PM)
YEah, formula figures to 840 per day
keuka (Dec 17, 2007 10:07:19 PM)
Seems to have something to do with muscle breakdown
keuka (Dec 17, 2007 10:07:30 PM)
Surprise on that, huh
riley04 (Dec 17, 2007 10:07:59 PM)
has anyone had problems with lesions on the lungs I was found to have a lesion on my right lung through a routine cat scan
keuka (Dec 17, 2007 10:08:00 PM)
We have about 8 minutes left gang
melh (Dec 17, 2007 10:08:00 PM)
natalie is on 10 mls of levocarnitine a day (100/1 strength I think)
hoodlum (Dec 17, 2007 10:08:29 PM)
melh is that SigmaTau brand?
melh (Dec 17, 2007 10:08:39 PM)
and co Q is 250 mgs a day, but should be like 400-600?? but no money to pay for all that
melh (Dec 17, 2007 10:08:56 PM)
okay, hood, i'll get up and check- lol
hoodlum (Dec 17, 2007 10:09:05 PM)
no... you don't have to...
mylilangel05 (Dec 17, 2007 10:09:11 PM)
yea here to we just make ends mee the way it is
melh (Dec 17, 2007 10:09:36 PM)
10% oral solution mfg. Riser
melh (Dec 17, 2007 10:09:43 PM)
oops, Rising
hoodlum (Dec 17, 2007 10:10:14 PM)
Sigma Tau is Rx... might want to havedr. write for it.... rather than over the counter
keuka (Dec 17, 2007 10:10:35 PM)
then maybe insurance will help?
hoodlum (Dec 17, 2007 10:10:51 PM)
yepper... then you might have enough to increase the Coq
mylilangel05 (Dec 17, 2007 10:11:29 PM)
has anyone got coq fro insurance to pay for it
hoodlum (Dec 17, 2007 10:11:30 PM)
also if you takethe Tishcon CoQ it is 3x more bioavailable
hoodlum (Dec 17, 2007 10:11:50 PM)
many have... that is one positive thing I've seen change over the years
keuka (Dec 17, 2007 10:11:51 PM)
some one on the chat does, but cannot remember who
mylilangel05 (Dec 17, 2007 10:12:14 PM)
i know emt has it covered through her insurance
melh (Dec 17, 2007 10:12:28 PM)
our tishcon co Q is covered by our state's special children's insurance, but right now it is only the 50mgs/5ml not the 100. we are trying to get that changed?
keuka (Dec 17, 2007 10:12:29 PM)
We have to be off in 4 minutes
hoodlum (Dec 17, 2007 10:12:35 PM)
lf has had it covered in pst/ not sure about now.
melh (Dec 17, 2007 10:12:57 PM)
i think i have another kidney stone brewing!
keuka (Dec 17, 2007 10:13:06 PM)
oh, Melh
mylilangel05 (Dec 17, 2007 10:13:07 PM)
trying to get insurance to pay fro ti
keuka (Dec 17, 2007 10:13:10 PM)
not fun
mylilangel05 (Dec 17, 2007 10:13:14 PM)
ewwwww
melh (Dec 17, 2007 10:13:14 PM)
i hope it comes out before the end of the year for insurance purposes!!
hoodlum (Dec 17, 2007 10:13:17 PM)
before the room closes. I pray everyone has a happy HEALTHY wonderrful holiday with family and friends!!!!! See you all in 2008!
riley04 (Dec 17, 2007 10:13:17 PM)
I do but it is a fight and we have a $6,000.00 family deduc. so I have to pay anyways
mylilangel05 (Dec 17, 2007 10:13:24 PM)
my husband get those all the time
mylilangel05 (Dec 17, 2007 10:13:50 PM)
Everyone have a wonderful holidays
melh (Dec 17, 2007 10:14:02 PM)
Merry Christmas everyone!!
keuka (Dec 17, 2007 10:14:05 PM)
The best of the holidays to you all.
melh (Dec 17, 2007 10:14:12 PM)
www.caringbridge.org/visit/natalieholmes
riley04 (Dec 17, 2007 10:14:29 PM)
same to you melh and everyone
keuka (Dec 17, 2007 10:14:43 PM)
Merry Christmas to you all.
riley04 (Dec 17, 2007 10:14:57 PM)
same to you keuka
keuka (Dec 17, 2007 10:15:17 PM)
Take care Riley. I hope that your family gets better before the holidays
melh (Dec 17, 2007 10:15:20 PM)
Merry Christmas to all and to all a good night!
riley04 (Dec 17, 2007 10:15:31 PM)
nite all
riley04 (Dec 17, 2007 10:15:36 PM)
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melh (Dec 17, 2007 10:15:52 PM)
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keuka (Dec 17, 2007 10:15:56 PM)
nite mehl and mylil. Take care.
mylilangel05 (Dec 17, 2007 10:16:01 PM)
good night
hoodlum (Dec 17, 2007 10:16:02 PM)
Nite all!
hoodlum (Dec 17, 2007 10:16:06 PM)
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mylilangel05 (Dec 17, 2007 10:16:06 PM)
tc merry christmas
mylilangel05 (Dec 17, 2007 10:16:13 PM)
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keuka (Dec 17, 2007 10:16:20 PM)
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keuka (Dec 17, 2007 10:16:25 PM)
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keuka (Dec 17, 2007 10:16:51 PM)
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