Re: still no news from Cindy :-(

[Guest guest]

The prayer service was beautiful. They said that one can give

platelets for n, or sign up for the first CARRA race in the

nation here in Portland on June 11th. We need a cure.

On Apr 12, 2006, at 9:11 PM, sonia1md wrote:

> ,

> You just let me breathe a sigh of relief to hear some good news. So

> glad that the platelet count is stabalizing. It sounds as if the

> docs are really staying on top of everything and I am sure they will

> get that lung fungus problem cleared up...It must be so scary right

> now for n. I am glad that she can communicate a bit with you

> and sure hope that she is able to get off that vent by Friday.

>

> Of course our family will continue to pray and believe for n's

> healing. How did the prayer service at the highschool go. I am

> sure n will be so touched by all the support of her friends.

>

> God Bless,

> --

>

> - In , Price <bc.price@...> wrote:

>>

>> He everyone, n woke up today and could communicate with us

> by

>> nodding. Her x ray has improved, and they are hoping that she

> can

>> come off of the vent on Friday. She now has a fungus in her

> lungs

>> that they are treating, and high blood pressure from the

>> cyclosporine. They will start her on methadone so she doesn't

> suffer

>> withdrawal from all of the pain meds. Her platelets have

>> stabilized . They are still very low, but no longer going down.

> So

>> we got some great news today. Thanks for all of the prayers.

>>

>>

>>

>> On Apr 12, 2006, at 9:43 AM, sonia1md wrote:

>>

>>> ,

>>>

>>> we all really appreciate you taking the time to update us. You

> are

>>> a member of our jra family and you have so much support being

>>> extended to your family thru the power of prayer.

>>>

>>> I am glad that last night was a better night. Do you have family

>>> that have come to stay with your younger children? I hope your

>>> tangible needs are being met. All we know to do is pray...if

> there

>>> is something else that we can do, please let us know!

>>>

>>> Blessings,

>>> (Aundrea 10 systemic jra)-

>>>

>>> -- In , Price <bc.price@> wrote:

>>>>

>>>> Thank you to everyone for praying for n. I believe in the

>>> power

>>>> of prayer. n's high school is having a prayer service for

>>> her

>>>> tonight.

>>>>

>>>> n had a good night last night. I don't have the results

>>> from

>>>> the latest chest x-ray or labs. They lowered her oxygen a

>>> little.

>>>>

>>>>

>>>>

>>>> On Apr 12, 2006, at 6:45 AM, Carey wrote:

>>>>

>>>>> Cinday and n,

>>>>> I'm new to the board and had basically lurked alot, but I

>>> wanted

>>>>> to send you my prayers and support too. n sounds like a

>>>>> fighter, which is the most important thing of all. *HUGS* to

>>> you

>>>>> all in this trying time.

>>>>>

>>>>> Carey and Ben (5, still waiting to be diagnosed)

>>>>>

>>>>> Price <bc.price@> wrote:

>>>>> n is still on the ventilator and in ICU. Her lung x ray

>>> was a

>>>>> little worse today. She has developed an infection in her

> lungs.

>>>>> She is on two very strong antibiotics. She is more sedated

>>> today,

>>>>> because if she isn't she really fights and her oxygen

> saturation

>>> rate

>>>>> goes all to hell. Her labs are slowly improving. They are no

>>> where

>>>>> near normal, but for the most part they are now headed in the

>>> right

>>>>> direction. Her platelets have increased the last two readings.

>>> She

>>>>> had a pretty good day today.

>>>>>

>>>>>

>>>>> On Apr 11, 2006, at 9:19 PM, ajaomom@ wrote:

>>>>>

>>>>>> i am worried sick!!!!!!!!!! i just wish we would

>>> hear

>>>>>> something

>>>>>> soon.........keeping them all in my thoughts and prayers just

>>>>>> about without

>>>>>> ceasing...........

>>>>>>

>>>>>>

>>>>>>

>>>>>> Luv and hugs,

>>>>>> Aj and Holly (12 yrs old, systemic jra since 9/94)

>>>>>> _www.caringbridge.org/visit/holly_

> (http://www.caringbridge.org/

>>>>>> visit/holly)

>>>>>>

>>>>>>

>>>>>>

>>>>>>

[Guest guest]

,

What exactly do you mean? Is this something that n needs now?

Sorry to be ignorant but is donating blood the same thing as

donating platelets or is that a different procedure?

I am glad that the prayer service went so well and I am sure that

you were blessed by it as well as those that attended.

I am so sorry to hear that n doesn't just continue to improve

and that there are times of backsliding mixed in with good news.

How are her lungs today? I just can't even imagine how hard this is

on you right now. The closest that we came to a situation like this

was when Aundrea was 5. She fell on some rusty wire that impaled

her leg. It went in about 12 " and required major surgery to remove

it. They told us that they had to remove some of her muscle due to

infection setting in and that they were going to be aggresive in

order to prevent further spread of infection and possible loss of

her leg. It was a horrific time and even afterwards when things

finally stabalized that was when I went into a depression mixed with

anxiety. Right now you are in survivor mode and doing everything

you can to support n...The body can only stay in survivor mode

for so long before it crashes. Do your best to get " some " sleep.

Try to eat. I know its hard but this journey back to health is

going to take n some time and you need to remain at

least " physically " strong for her and for your other children.

You have people all over this country praying for n and for

your family! It is my prayer this day that n would really turn

the corner and that her platelets would stabalize and her lungs

would heal!

Hang in there ....I so wish I could do more for you!

(Aundrea 10 systemic jra)

-

-- In , Price <bc.price@...> wrote:

>

> The prayer service was beautiful. They said that one can give

> platelets for n, or sign up for the first CARRA race in the

> nation here in Portland on June 11th. We need a cure.

>

>

>

> On Apr 12, 2006, at 9:11 PM, sonia1md wrote:

>

> > ,

> > You just let me breathe a sigh of relief to hear some good

news. So

> > glad that the platelet count is stabalizing. It sounds as if the

> > docs are really staying on top of everything and I am sure they

will

> > get that lung fungus problem cleared up...It must be so scary

right

> > now for n. I am glad that she can communicate a bit with

you

> > and sure hope that she is able to get off that vent by Friday.

> >

> > Of course our family will continue to pray and believe for

n's

> > healing. How did the prayer service at the highschool go. I am

> > sure n will be so touched by all the support of her friends.

> >

> > God Bless,

> > --

> >

> > - In , Price <bc.price@> wrote:

> >>

> >> He everyone, n woke up today and could communicate with us

> > by

> >> nodding. Her x ray has improved, and they are hoping that she

> > can

> >> come off of the vent on Friday. She now has a fungus in her

> > lungs

> >> that they are treating, and high blood pressure from the

> >> cyclosporine. They will start her on methadone so she doesn't

> > suffer

> >> withdrawal from all of the pain meds. Her platelets have

> >> stabilized . They are still very low, but no longer going down.

> > So

> >> we got some great news today. Thanks for all of the prayers.

> >>

> >>

> >>

> >> On Apr 12, 2006, at 9:43 AM, sonia1md wrote:

> >>

> >>> ,

> >>>

> >>> we all really appreciate you taking the time to update us. You

> > are

> >>> a member of our jra family and you have so much support being

> >>> extended to your family thru the power of prayer.

> >>>

> >>> I am glad that last night was a better night. Do you have

family

> >>> that have come to stay with your younger children? I hope your

> >>> tangible needs are being met. All we know to do is pray...if

> > there

> >>> is something else that we can do, please let us know!

> >>>

> >>> Blessings,

> >>> (Aundrea 10 systemic jra)-

> >>>

> >>> -- In , Price <bc.price@> wrote:

> >>>>

> >>>> Thank you to everyone for praying for n. I believe in

the

> >>> power

> >>>> of prayer. n's high school is having a prayer service

for

> >>> her

> >>>> tonight.

> >>>>

> >>>> n had a good night last night. I don't have the results

> >>> from

> >>>> the latest chest x-ray or labs. They lowered her oxygen a

> >>> little.

> >>>>

> >>>>

> >>>>

> >>>> On Apr 12, 2006, at 6:45 AM, Carey wrote:

> >>>>

> >>>>> Cinday and n,

> >>>>> I'm new to the board and had basically lurked alot, but I

> >>> wanted

> >>>>> to send you my prayers and support too. n sounds like a

> >>>>> fighter, which is the most important thing of all. *HUGS* to

> >>> you

> >>>>> all in this trying time.

> >>>>>

> >>>>> Carey and Ben (5, still waiting to be diagnosed)

> >>>>>

> >>>>> Price <bc.price@> wrote:

> >>>>> n is still on the ventilator and in ICU. Her lung x

ray

> >>> was a

> >>>>> little worse today. She has developed an infection in her

> > lungs.

> >>>>> She is on two very strong antibiotics. She is more sedated

> >>> today,

> >>>>> because if she isn't she really fights and her oxygen

> > saturation

> >>> rate

> >>>>> goes all to hell. Her labs are slowly improving. They are

no

> >>> where

> >>>>> near normal, but for the most part they are now headed in the

> >>> right

> >>>>> direction. Her platelets have increased the last two

readings.

> >>> She

> >>>>> had a pretty good day today.

> >>>>>

> >>>>>

> >>>>> On Apr 11, 2006, at 9:19 PM, ajaomom@ wrote:

> >>>>>

> >>>>>> i am worried sick!!!!!!!!!! i just wish we

would

> >>> hear

> >>>>>> something

> >>>>>> soon.........keeping them all in my thoughts and prayers

just

> >>>>>> about without

> >>>>>> ceasing...........

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>> Luv and hugs,

> >>>>>> Aj and Holly (12 yrs old, systemic jra since 9/94)

> >>>>>> _www.caringbridge.org/visit/holly_

> > (http://www.caringbridge.org/

> >>>>>> visit/holly)

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>>

[Guest guest]

:

We are continuing our prayers for n.

It was around this time last year that our dear Tree was in ICU. You

remember how critical her condition was then, and how she fought and won.

Remember that n is much younger and will have even more stamina to

fight this, and win.

Talk to n even if she is not conscious and is sedated. Encouragement

is everything! I would stand at Tree's bedside and tell her all kinds of

things and encourage her. You never know if something might get through.

Tree's family was a constant source of encouragement and I feel sure that

it was her persistence that helped her continue to rally.

Bless you and your family, and keep in touch when you can.

and Rob 16 Spondy

On Thu, 13 Apr 2006 08:44:39 -0700 Price <bc.price@...>

writes:

Emanuel Children's Hospital in ICU,

On Apr 13, 2006, at 7:03 AM, <Alia.Pranke@...> wrote:

> - I am sorry to hear her platelets went down again.. Hang in

> there

> - you are going through a lot right now. We are praying for you and

> your

> family - especially n.

>

> Which hospital is she at? Is she still in ICU?

>

> Alia

>

> ________________________________

>

> From: [mailto: ] On

> Behalf Of Price

> Sent: Thursday, April 13, 2006 8:47 AM

>

> Subject: Re: still no news from :-(

>

>

> Thank you. I am starting to get discouraged. Her platelets went

> down last night.

> On Apr 13, 2006, at 6:42 AM, jatwill@... wrote:

>

>> That is great news about n and such a relief to hear. We are

>> still sending prayers for her continued recovery. She is strong

>> and things will be even better soon. Jan

>>

>> Re: still no news from :-(

>>

>>

>> He everyone, n woke up today and could communicate with us by

>> nodding. Her x ray has improved, and they are hoping that she can

>> come off of the vent on Friday. She now has a fungus in her lungs

>> that they are treating, and high blood pressure from the

>> cyclosporine. They will start her on methadone so she doesn't suffer

>> withdrawal from all of the pain meds. Her platelets have

>> stabilized . They are still very low, but no longer going down. So

>> we got some great news today. Thanks for all of the prayers.

>>

>>

>>

>> On Apr 12, 2006, at 9:43 AM, sonia1md wrote:

>>

>>> ,

>>>

>>> we all really appreciate you taking the time to update us. You are

>>> a member of our jra family and you have so much support being

>>> extended to your family thru the power of prayer.

>>>

>>> I am glad that last night was a better night. Do you have family

>>> that have come to stay with your younger children? I hope your

>>> tangible needs are being met. All we know to do is pray...if there

>>> is something else that we can do, please let us know!

>>>

>>> Blessings,

>>> (Aundrea 10 systemic jra)-

>>>

>>> -- In , Price <bc.price@...> wrote:

>>>>

>>>> Thank you to everyone for praying for n. I believe in the

>>> power

>>>> of prayer. n's high school is having a prayer service for

>>> her

>>>> tonight.

>>>>

>>>> n had a good night last night. I don't have the results

>>> from

>>>> the latest chest x-ray or labs. They lowered her oxygen a

>>> little.

>>>>

>>>>

>>>>

>>>> On Apr 12, 2006, at 6:45 AM, Carey wrote:

>>>>

>>>>> Cinday and n,

>>>>> I'm new to the board and had basically lurked alot, but I

>>> wanted

>>>>> to send you my prayers and support too. n sounds like a

>>>>> fighter, which is the most important thing of all. *HUGS* to

>>> you

>>>>> all in this trying time.

>>>>>

>>>>> Carey and Ben (5, still waiting to be diagnosed)

>>>>>

>>>>> Price <bc.price@...> wrote:

>>>>> n is still on the ventilator and in ICU. Her lung x ray

>>> was a

>>>>> little worse today. She has developed an infection in her lungs.

>>>>> She is on two very strong antibiotics. She is more sedated

>>> today,

>>>>> because if she isn't she really fights and her oxygen saturation

>>> rate

>>>>> goes all to hell. Her labs are slowly improving. They are no

>>> where

>>>>> near normal, but for the most part they are now headed in the

>>> right

>>>>> direction. Her platelets have increased the last two readings.

>>> She

>>>>> had a pretty good day today.

>>>>>

>>>>>

>>>>> On Apr 11, 2006, at 9:19 PM, ajaomom@... wrote:

>>>>>

>>>>>> i am worried sick!!!!!!!!!! i just wish we would

>>> hear

>>>>>> something

>>>>>> soon.........keeping them all in my thoughts and prayers just

>>>>>> about without

>>>>>> ceasing...........

>>>>>>

>>>>>>

>>>>>>

>>>>>> Luv and hugs,

>>>>>> Aj and Holly (12 yrs old, systemic jra since 9/94)

>>>>>> _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/

>>>>>> visit/holly)

>>>>>>

>>>>>>

>>>>>>

>>>>>>

[Guest guest]

n had to get a platelet transfusion several days ago. Giving

platelets is similar to giving blood, but it takes longer-about two

hours.

We are going to have a very good " Good Friday " tomorrow. They will

pull the vent tomorrow at 8 am. n started methadone today to

get her off of all the drugs. It is easier on her that way, rather

than going cold turkey and going thru withdrawal symptoms. Her

platelets are up today to the highest level since all of this began.

She is weak as a newborn lamb, but I am slowly getting my daughter

back. She won, and the arthritis lost.

This is what I have learned about MAS, so maybe it will help someone

in the future. She caught mono and it threw her into MAS. Her

symptoms were a bad sore throat , swollen lymph nodes and a fever.

All probably part of the mono. One thing was different looking

back. She would drink and say that no matter how much she drank, she

was still thirsty. That was a clue that I knew nothing about. At

that time she was probably " third spacing. " I am no doctor, but this

is how I understand it. All of her vessels in her body were leaking

fluid. Not blood, but fluid. This fluid was going into " third

space " Spaces around the organs. The fluid went into her lungs,

around her lungs, and around her heart. So she would drink, but the

fluid just kept leaking around her organs. Thus her lungs filled up

and we had a life and death situation. Other than that, we had no

warning. The symptoms were like mono or the flu. I hope no one ever

has to go thru MAS on this listserve or anywhere else. It is no

fun. We have to find the cure. (n, 17, systemic)

On Apr 13, 2006, at 10:01 AM, sonia1md wrote:

> ,

>

> What exactly do you mean? Is this something that n needs now?

> Sorry to be ignorant but is donating blood the same thing as

> donating platelets or is that a different procedure?

>

> I am glad that the prayer service went so well and I am sure that

> you were blessed by it as well as those that attended.

>

> I am so sorry to hear that n doesn't just continue to improve

> and that there are times of backsliding mixed in with good news.

> How are her lungs today? I just can't even imagine how hard this is

> on you right now. The closest that we came to a situation like this

> was when Aundrea was 5. She fell on some rusty wire that impaled

> her leg. It went in about 12 " and required major surgery to remove

> it. They told us that they had to remove some of her muscle due to

> infection setting in and that they were going to be aggresive in

> order to prevent further spread of infection and possible loss of

> her leg. It was a horrific time and even afterwards when things

> finally stabalized that was when I went into a depression mixed with

> anxiety. Right now you are in survivor mode and doing everything

> you can to support n...The body can only stay in survivor mode

> for so long before it crashes. Do your best to get " some " sleep.

> Try to eat. I know its hard but this journey back to health is

> going to take n some time and you need to remain at

> least " physically " strong for her and for your other children.

>

> You have people all over this country praying for n and for

> your family! It is my prayer this day that n would really turn

> the corner and that her platelets would stabalize and her lungs

> would heal!

>

> Hang in there ....I so wish I could do more for you!

>

> (Aundrea 10 systemic jra)

> -

>

> -- In , Price <bc.price@...> wrote:

>>

>> The prayer service was beautiful. They said that one can give

>> platelets for n, or sign up for the first CARRA race in the

>> nation here in Portland on June 11th. We need a cure.

>>

>>

>>

>> On Apr 12, 2006, at 9:11 PM, sonia1md wrote:

>>

>>> ,

>>> You just let me breathe a sigh of relief to hear some good

> news. So

>>> glad that the platelet count is stabalizing. It sounds as if the

>>> docs are really staying on top of everything and I am sure they

> will

>>> get that lung fungus problem cleared up...It must be so scary

> right

>>> now for n. I am glad that she can communicate a bit with

> you

>>> and sure hope that she is able to get off that vent by Friday.

>>>

>>> Of course our family will continue to pray and believe for

> n's

>>> healing. How did the prayer service at the highschool go. I am

>>> sure n will be so touched by all the support of her friends.

>>>

>>> God Bless,

>>> --

>>>

>>> - In , Price <bc.price@> wrote:

>>>>

>>>> He everyone, n woke up today and could communicate with us

>>> by

>>>> nodding. Her x ray has improved, and they are hoping that she

>>> can

>>>> come off of the vent on Friday. She now has a fungus in her

>>> lungs

>>>> that they are treating, and high blood pressure from the

>>>> cyclosporine. They will start her on methadone so she doesn't

>>> suffer

>>>> withdrawal from all of the pain meds. Her platelets have

>>>> stabilized . They are still very low, but no longer going down.

>>> So

>>>> we got some great news today. Thanks for all of the prayers.

>

>>>>

>>>>

>>>>

>>>> On Apr 12, 2006, at 9:43 AM, sonia1md wrote:

>>>>

>>>>> ,

>>>>>

>>>>> we all really appreciate you taking the time to update us. You

>>> are

>>>>> a member of our jra family and you have so much support being

>>>>> extended to your family thru the power of prayer.

>>>>>

>>>>> I am glad that last night was a better night. Do you have

> family

>>>>> that have come to stay with your younger children? I hope your

>>>>> tangible needs are being met. All we know to do is pray...if

>>> there

>>>>> is something else that we can do, please let us know!

>>>>>

>>>>> Blessings,

>>>>> (Aundrea 10 systemic jra)-

>>>>>

>>>>> -- In , Price <bc.price@> wrote:

>>>>>>

>>>>>> Thank you to everyone for praying for n. I believe in

> the

>>>>> power

>>>>>> of prayer. n's high school is having a prayer service

> for

>>>>> her

>>>>>> tonight.

>>>>>>

>>>>>> n had a good night last night. I don't have the results

>>>>> from

>>>>>> the latest chest x-ray or labs. They lowered her oxygen a

>>>>> little.

>>>>>>

>>>>>>

>>>>>>

>>>>>> On Apr 12, 2006, at 6:45 AM, Carey wrote:

>>>>>>

>>>>>>> Cinday and n,

>>>>>>> I'm new to the board and had basically lurked alot, but I

>>>>> wanted

>>>>>>> to send you my prayers and support too. n sounds like a

>>>>>>> fighter, which is the most important thing of all. *HUGS* to

>>>>> you

>>>>>>> all in this trying time.

>>>>>>>

>>>>>>> Carey and Ben (5, still waiting to be diagnosed)

>>>>>>>

>>>>>>> Price <bc.price@> wrote:

>>>>>>> n is still on the ventilator and in ICU. Her lung x

> ray

>>>>> was a

>>>>>>> little worse today. She has developed an infection in her

>>> lungs.

>>>>>>> She is on two very strong antibiotics. She is more sedated

>>>>> today,

>>>>>>> because if she isn't she really fights and her oxygen

>>> saturation

>>>>> rate

>>>>>>> goes all to hell. Her labs are slowly improving. They are

> no

>>>>> where

>>>>>>> near normal, but for the most part they are now headed in the

>>>>> right

>>>>>>> direction. Her platelets have increased the last two

> readings.

>>>>> She

>>>>>>> had a pretty good day today.

>>>>>>>

>>>>>>>

>>>>>>> On Apr 11, 2006, at 9:19 PM, ajaomom@ wrote:

>>>>>>>

>>>>>>>> i am worried sick!!!!!!!!!! i just wish we

> would

>>>>> hear

>>>>>>>> something

>>>>>>>> soon.........keeping them all in my thoughts and prayers

> just

>>>>>>>> about without

>>>>>>>> ceasing...........

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>> Luv and hugs,

>>>>>>>> Aj and Holly (12 yrs old, systemic jra since 9/94)

>>>>>>>> _www.caringbridge.org/visit/holly_

>>> (http://www.caringbridge.org/

>>>>>>>> visit/holly)

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>>

[Guest guest]

--,

I know I have not posted much, but please know that my prayers for

n have not faltered since she was admitted. Each time when i

walk in from work in the mornings, the 1st thing i do is check the

mail to see how she is doing.

This must have been the worse week of your life. As the mom of a

systemic kid this had hit too close to home and I have to commend

you for being there for n and also taking the time to keep us

all informed.

I have taken your advise and printed out a bunch of info on MAS and

placed it in Nicks medical file that goes with us everywhere. I l

have also alerted my husband to the seriousness of MAS and seeking

quick medical intervention. The infomation you have posted about how

this started with n is priceless. I will also be printing out

your last post to the list and adding it to the file.

I am soo sorry you had to go though this and i am so grateful for

you to even have the level headiness to think about posting to the

list. THANK YOU!

I asked earlier, but im sure you might have missed it. I would like

to send n a care package when shes a little better and wondered

what were her interests?

How long do they think she will be in the hospital? what is the

recovery time from this? can you develop MAS again? will she be on

more medications long term? I know a lot of questions, sorry. But

these are qestions i cant seem to find the answers to online.

hearing about this 1st hand is worht more than 100's reports I can

read online.

Hang in there and tomorrow really will be " Good Friday "

prayers always

Helen and (8.systemic)

ce <bc.price@...> wrote:

>

> n had to get a platelet transfusion several days ago.

Giving

> platelets is similar to giving blood, but it takes longer-about

two

> hours.

>

> We are going to have a very good " Good Friday " tomorrow. They

will

> pull the vent tomorrow at 8 am. n started methadone today

to

> get her off of all the drugs. It is easier on her that way,

rather

> than going cold turkey and going thru withdrawal symptoms. Her

> platelets are up today to the highest level since all of this

began.

> She is weak as a newborn lamb, but I am slowly getting my

daughter

> back. She won, and the arthritis lost.

>

> This is what I have learned about MAS, so maybe it will help

someone

> in the future. She caught mono and it threw her into MAS. Her

> symptoms were a bad sore throat , swollen lymph nodes and a

fever.

> All probably part of the mono. One thing was different looking

> back. She would drink and say that no matter how much she drank,

she

> was still thirsty. That was a clue that I knew nothing about.

At

> that time she was probably " third spacing. " I am no doctor, but

this

> is how I understand it. All of her vessels in her body were

leaking

> fluid. Not blood, but fluid. This fluid was going into " third

> space " Spaces around the organs. The fluid went into her lungs,

> around her lungs, and around her heart. So she would drink, but

the

> fluid just kept leaking around her organs. Thus her lungs filled

up

> and we had a life and death situation. Other than that, we had

no

> warning. The symptoms were like mono or the flu. I hope no one

ever

> has to go thru MAS on this listserve or anywhere else. It is no

> fun. We have to find the cure. (n, 17, systemic)

>

>

>

> On Apr 13, 2006, at 10:01 AM, sonia1md wrote:

>

> > ,

> >

> > What exactly do you mean? Is this something that n needs

now?

> > Sorry to be ignorant but is donating blood the same thing as

> > donating platelets or is that a different procedure?

> >

> > I am glad that the prayer service went so well and I am sure that

> > you were blessed by it as well as those that attended.

> >

> > I am so sorry to hear that n doesn't just continue to

improve

> > and that there are times of backsliding mixed in with good news.

> > How are her lungs today? I just can't even imagine how hard

this is

> > on you right now. The closest that we came to a situation like

this

> > was when Aundrea was 5. She fell on some rusty wire that impaled

> > her leg. It went in about 12 " and required major surgery to

remove

> > it. They told us that they had to remove some of her muscle due

to

> > infection setting in and that they were going to be aggresive in

> > order to prevent further spread of infection and possible loss of

> > her leg. It was a horrific time and even afterwards when things

> > finally stabalized that was when I went into a depression mixed

with

> > anxiety. Right now you are in survivor mode and doing everything

> > you can to support n...The body can only stay in survivor

mode

> > for so long before it crashes. Do your best to get " some " sleep.

> > Try to eat. I know its hard but this journey back to health is

> > going to take n some time and you need to remain at

> > least " physically " strong for her and for your other children.

> >

> > You have people all over this country praying for n and for

> > your family! It is my prayer this day that n would really

turn

> > the corner and that her platelets would stabalize and her lungs

> > would heal!

> >

> > Hang in there ....I so wish I could do more for you!

> >

> > (Aundrea 10 systemic jra)

> > -

> >

> > -- In , Price <bc.price@> wrote:

> >>

> >> The prayer service was beautiful. They said that one can give

> >> platelets for n, or sign up for the first CARRA race in the

> >> nation here in Portland on June 11th. We need a cure.

> >>

> >>

> >>

> >> On Apr 12, 2006, at 9:11 PM, sonia1md wrote:

> >>

> >>> ,

> >>> You just let me breathe a sigh of relief to hear some good

> > news. So

> >>> glad that the platelet count is stabalizing. It sounds as if

the

> >>> docs are really staying on top of everything and I am sure they

> > will

> >>> get that lung fungus problem cleared up...It must be so scary

> > right

> >>> now for n. I am glad that she can communicate a bit with

> > you

> >>> and sure hope that she is able to get off that vent by Friday.

> >>>

> >>> Of course our family will continue to pray and believe for

> > n's

> >>> healing. How did the prayer service at the highschool go. I

am

> >>> sure n will be so touched by all the support of her

friends.

> >>>

> >>> God Bless,

> >>> --

> >>>

> >>> - In , Price <bc.price@> wrote:

> >>>>

> >>>> He everyone, n woke up today and could communicate with

us

> >>> by

> >>>> nodding. Her x ray has improved, and they are hoping that she

> >>> can

> >>>> come off of the vent on Friday. She now has a fungus in her

> >>> lungs

> >>>> that they are treating, and high blood pressure from the

> >>>> cyclosporine. They will start her on methadone so she doesn't

> >>> suffer

> >>>> withdrawal from all of the pain meds. Her platelets have

> >>>> stabilized . They are still very low, but no longer going

down.

> >>> So

> >>>> we got some great news today. Thanks for all of the prayers.

> >

> >>>>

> >>>>

> >>>>

> >>>> On Apr 12, 2006, at 9:43 AM, sonia1md wrote:

> >>>>

> >>>>> ,

> >>>>>

> >>>>> we all really appreciate you taking the time to update us.

You

> >>> are

> >>>>> a member of our jra family and you have so much support being

> >>>>> extended to your family thru the power of prayer.

> >>>>>

> >>>>> I am glad that last night was a better night. Do you have

> > family

> >>>>> that have come to stay with your younger children? I hope

your

> >>>>> tangible needs are being met. All we know to do is pray...if

> >>> there

> >>>>> is something else that we can do, please let us know!

> >>>>>

> >>>>> Blessings,

> >>>>> (Aundrea 10 systemic jra)-

> >>>>>

> >>>>> -- In , Price <bc.price@>

wrote:

> >>>>>>

> >>>>>> Thank you to everyone for praying for n. I believe in

> > the

> >>>>> power

> >>>>>> of prayer. n's high school is having a prayer service

> > for

> >>>>> her

> >>>>>> tonight.

> >>>>>>

> >>>>>> n had a good night last night. I don't have the

results

> >>>>> from

> >>>>>> the latest chest x-ray or labs. They lowered her oxygen a

> >>>>> little.

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>> On Apr 12, 2006, at 6:45 AM, Carey wrote:

> >>>>>>

> >>>>>>> Cinday and n,

> >>>>>>> I'm new to the board and had basically lurked alot, but I

> >>>>> wanted

> >>>>>>> to send you my prayers and support too. n sounds like

a

> >>>>>>> fighter, which is the most important thing of all. *HUGS*

to

> >>>>> you

> >>>>>>> all in this trying time.

> >>>>>>>

> >>>>>>> Carey and Ben (5, still waiting to be diagnosed)

> >>>>>>>

> >>>>>>> Price <bc.price@> wrote:

> >>>>>>> n is still on the ventilator and in ICU. Her lung x

> > ray

> >>>>> was a

> >>>>>>> little worse today. She has developed an infection in her

> >>> lungs.

> >>>>>>> She is on two very strong antibiotics. She is more sedated

> >>>>> today,

> >>>>>>> because if she isn't she really fights and her oxygen

> >>> saturation

> >>>>> rate

> >>>>>>> goes all to hell. Her labs are slowly improving. They are

> > no

> >>>>> where

> >>>>>>> near normal, but for the most part they are now headed in

the

> >>>>> right

> >>>>>>> direction. Her platelets have increased the last two

> > readings.

> >>>>> She

> >>>>>>> had a pretty good day today.

> >>>>>>>

> >>>>>>>

> >>>>>>> On Apr 11, 2006, at 9:19 PM, ajaomom@ wrote:

> >>>>>>>

> >>>>>>>> i am worried sick!!!!!!!!!! i just wish we

> > would

> >>>>> hear

> >>>>>>>> something

> >>>>>>>> soon.........keeping them all in my thoughts and prayers

> > just

> >>>>>>>> about without

> >>>>>>>> ceasing...........

> >>>>>>>>

> >>>>>>>>

> >>>>>>>>

> >>>>>>>> Luv and hugs,

> >>>>>>>> Aj and Holly (12 yrs old, systemic jra since 9/94)

> >>>>>>>> _www.caringbridge.org/visit/holly_

> >>> (http://www.caringbridge.org/

> >>>>>>>> visit/holly)

> >>>>>>>>

> >>>>>>>>

> >>>>>>>>

> >>>>>>>>

[Guest guest]

God does hear us and answers our prayers...I am so incredibly happy

to hear that n is turning the corner and that the vent gets

pulled tomorrow.

Thank you for taking the time to more fully explain MAS. I have no

doubt that everyone that has been following your posts will always

remember what MAS is and to be on the look out for it.

Take good care of your " little lamb " and let us know how things go

with getting rid of the vent! :-)

(Aundrea 10 systemic jra)-

-- In , Price <bc.price@...> wrote:

>

> n had to get a platelet transfusion several days ago.

Giving

> platelets is similar to giving blood, but it takes longer-about

two

> hours.

>

> We are going to have a very good " Good Friday " tomorrow. They

will

> pull the vent tomorrow at 8 am. n started methadone today

to

> get her off of all the drugs. It is easier on her that way,

rather

> than going cold turkey and going thru withdrawal symptoms. Her

> platelets are up today to the highest level since all of this

began.

> She is weak as a newborn lamb, but I am slowly getting my

daughter

> back. She won, and the arthritis lost.

>

> This is what I have learned about MAS, so maybe it will help

someone

> in the future. She caught mono and it threw her into MAS. Her

> symptoms were a bad sore throat , swollen lymph nodes and a

fever.

> All probably part of the mono. One thing was different looking

> back. She would drink and say that no matter how much she drank,

she

> was still thirsty. That was a clue that I knew nothing about.

At

> that time she was probably " third spacing. " I am no doctor, but

this

> is how I understand it. All of her vessels in her body were

leaking

> fluid. Not blood, but fluid. This fluid was going into " third

> space " Spaces around the organs. The fluid went into her lungs,

> around her lungs, and around her heart. So she would drink, but

the

> fluid just kept leaking around her organs. Thus her lungs filled

up

> and we had a life and death situation. Other than that, we had

no

> warning. The symptoms were like mono or the flu. I hope no one

ever

> has to go thru MAS on this listserve or anywhere else. It is no

> fun. We have to find the cure. (n, 17, systemic)

>

>

>

> On Apr 13, 2006, at 10:01 AM, sonia1md wrote:

>

> > ,

> >

> > What exactly do you mean? Is this something that n needs

now?

> > Sorry to be ignorant but is donating blood the same thing as

> > donating platelets or is that a different procedure?

> >

> > I am glad that the prayer service went so well and I am sure that

> > you were blessed by it as well as those that attended.

> >

> > I am so sorry to hear that n doesn't just continue to

improve

> > and that there are times of backsliding mixed in with good news.

> > How are her lungs today? I just can't even imagine how hard

this is

> > on you right now. The closest that we came to a situation like

this

> > was when Aundrea was 5. She fell on some rusty wire that impaled

> > her leg. It went in about 12 " and required major surgery to

remove

> > it. They told us that they had to remove some of her muscle due

to

> > infection setting in and that they were going to be aggresive in

> > order to prevent further spread of infection and possible loss of

> > her leg. It was a horrific time and even afterwards when things

> > finally stabalized that was when I went into a depression mixed

with

> > anxiety. Right now you are in survivor mode and doing everything

> > you can to support n...The body can only stay in survivor

mode

> > for so long before it crashes. Do your best to get " some " sleep.

> > Try to eat. I know its hard but this journey back to health is

> > going to take n some time and you need to remain at

> > least " physically " strong for her and for your other children.

> >

> > You have people all over this country praying for n and for

> > your family! It is my prayer this day that n would really

turn

> > the corner and that her platelets would stabalize and her lungs

> > would heal!

> >

> > Hang in there ....I so wish I could do more for you!

> >

> > (Aundrea 10 systemic jra)

> > -

> >

> > -- In , Price <bc.price@> wrote:

> >>

> >> The prayer service was beautiful. They said that one can give

> >> platelets for n, or sign up for the first CARRA race in the

> >> nation here in Portland on June 11th. We need a cure.

> >>

> >>

> >>

> >> On Apr 12, 2006, at 9:11 PM, sonia1md wrote:

> >>

> >>> ,

> >>> You just let me breathe a sigh of relief to hear some good

> > news. So

> >>> glad that the platelet count is stabalizing. It sounds as if

the

> >>> docs are really staying on top of everything and I am sure they

> > will

> >>> get that lung fungus problem cleared up...It must be so scary

> > right

> >>> now for n. I am glad that she can communicate a bit with

> > you

> >>> and sure hope that she is able to get off that vent by Friday.

> >>>

> >>> Of course our family will continue to pray and believe for

> > n's

> >>> healing. How did the prayer service at the highschool go. I

am

> >>> sure n will be so touched by all the support of her

friends.

> >>>

> >>> God Bless,

> >>> --

> >>>

> >>> - In , Price <bc.price@> wrote:

> >>>>

> >>>> He everyone, n woke up today and could communicate with

us

> >>> by

> >>>> nodding. Her x ray has improved, and they are hoping that she

> >>> can

> >>>> come off of the vent on Friday. She now has a fungus in her

> >>> lungs

> >>>> that they are treating, and high blood pressure from the

> >>>> cyclosporine. They will start her on methadone so she doesn't

> >>> suffer

> >>>> withdrawal from all of the pain meds. Her platelets have

> >>>> stabilized . They are still very low, but no longer going

down.

> >>> So

> >>>> we got some great news today. Thanks for all of the prayers.

> >

> >>>>

> >>>>

> >>>>

> >>>> On Apr 12, 2006, at 9:43 AM, sonia1md wrote:

> >>>>

> >>>>> ,

> >>>>>

> >>>>> we all really appreciate you taking the time to update us.

You

> >>> are

> >>>>> a member of our jra family and you have so much support being

> >>>>> extended to your family thru the power of prayer.

> >>>>>

> >>>>> I am glad that last night was a better night. Do you have

> > family

> >>>>> that have come to stay with your younger children? I hope

your

> >>>>> tangible needs are being met. All we know to do is pray...if

> >>> there

> >>>>> is something else that we can do, please let us know!

> >>>>>

> >>>>> Blessings,

> >>>>> (Aundrea 10 systemic jra)-

> >>>>>

> >>>>> -- In , Price <bc.price@>

wrote:

> >>>>>>

> >>>>>> Thank you to everyone for praying for n. I believe in

> > the

> >>>>> power

> >>>>>> of prayer. n's high school is having a prayer service

> > for

> >>>>> her

> >>>>>> tonight.

> >>>>>>

> >>>>>> n had a good night last night. I don't have the

results

> >>>>> from

> >>>>>> the latest chest x-ray or labs. They lowered her oxygen a

> >>>>> little.

> >>>>>>

> >>>>>>

> >>>>>>

> >>>>>> On Apr 12, 2006, at 6:45 AM, Carey wrote:

> >>>>>>

> >>>>>>> Cinday and n,

> >>>>>>> I'm new to the board and had basically lurked alot, but I

> >>>>> wanted

> >>>>>>> to send you my prayers and support too. n sounds like

a

> >>>>>>> fighter, which is the most important thing of all. *HUGS*

to

> >>>>> you

> >>>>>>> all in this trying time.

> >>>>>>>

> >>>>>>> Carey and Ben (5, still waiting to be diagnosed)

> >>>>>>>

> >>>>>>> Price <bc.price@> wrote:

> >>>>>>> n is still on the ventilator and in ICU. Her lung x

> > ray

> >>>>> was a

> >>>>>>> little worse today. She has developed an infection in her

> >>> lungs.

> >>>>>>> She is on two very strong antibiotics. She is more sedated

> >>>>> today,

> >>>>>>> because if she isn't she really fights and her oxygen

> >>> saturation

> >>>>> rate

> >>>>>>> goes all to hell. Her labs are slowly improving. They are

> > no

> >>>>> where

> >>>>>>> near normal, but for the most part they are now headed in

the

> >>>>> right

> >>>>>>> direction. Her platelets have increased the last two

> > readings.

> >>>>> She

> >>>>>>> had a pretty good day today.

> >>>>>>>

> >>>>>>>

> >>>>>>> On Apr 11, 2006, at 9:19 PM, ajaomom@ wrote:

> >>>>>>>

> >>>>>>>> i am worried sick!!!!!!!!!! i just wish we

> > would

> >>>>> hear

> >>>>>>>> something

> >>>>>>>> soon.........keeping them all in my thoughts and prayers

> > just

> >>>>>>>> about without

> >>>>>>>> ceasing...........

> >>>>>>>>

> >>>>>>>>

> >>>>>>>>

> >>>>>>>> Luv and hugs,

> >>>>>>>> Aj and Holly (12 yrs old, systemic jra since 9/94)

> >>>>>>>> _www.caringbridge.org/visit/holly_

> >>> (http://www.caringbridge.org/

> >>>>>>>> visit/holly)

> >>>>>>>>

> >>>>>>>>

> >>>>>>>>

> >>>>>>>>

[Guest guest]

After the vent is pulled she will be in the ICU for a minimum of 24

more hours. If she is stable, then she will be moved to a regular

room. She can not go home on methadone and that takes several days

to get off of that. So maybe the middle of next week?

I don't know the recovery time, because she also has mono on top of

the MAS. Mono can vary from person to person on the length of

recovery. I have asked the doctor if she will be fighting the MAS as

long as she has mono. He doesn't know. Yes, she can get MAS again.

There is some literature that some kids suffer from chronic recurring

MAS. Wouldn't that be a nightmare? I think she will be on the

cyclosporine for a couple of months. I have not asked about the

steroids, because I am afraid of the answer. Are you sitting down?

She is currently on 100mg of steroids a day. It turns my stomach,

but I know it is saving her life. (n, 17, systemic)

On Apr 13, 2006, at 7:17 PM, hburger64 wrote:

> --,

>

> I know I have not posted much, but please know that my prayers for

> n have not faltered since she was admitted. Each time when i

> walk in from work in the mornings, the 1st thing i do is check the

> mail to see how she is doing.

>

> This must have been the worse week of your life. As the mom of a

> systemic kid this had hit too close to home and I have to commend

> you for being there for n and also taking the time to keep us

> all informed.

>

> I have taken your advise and printed out a bunch of info on MAS and

> placed it in Nicks medical file that goes with us everywhere. I l

> have also alerted my husband to the seriousness of MAS and seeking

> quick medical intervention. The infomation you have posted about how

> this started with n is priceless. I will also be printing out

> your last post to the list and adding it to the file.

>

> I am soo sorry you had to go though this and i am so grateful for

> you to even have the level headiness to think about posting to the

> list. THANK YOU!

>

> I asked earlier, but im sure you might have missed it. I would like

> to send n a care package when shes a little better and wondered

> what were her interests?

>

> How long do they think she will be in the hospital? what is the

> recovery time from this? can you develop MAS again? will she be on

> more medications long term? I know a lot of questions, sorry. But

> these are qestions i cant seem to find the answers to online.

> hearing about this 1st hand is worht more than 100's reports I can

> read online.

>

> Hang in there and tomorrow really will be " Good Friday "

>

> prayers always

>

> Helen and (8.systemic)

>

>

> ce <bc.price@...> wrote:

>>

>> n had to get a platelet transfusion several days ago.

> Giving

>> platelets is similar to giving blood, but it takes longer-about

> two

>> hours.

>>

>> We are going to have a very good " Good Friday " tomorrow. They

> will

>> pull the vent tomorrow at 8 am. n started methadone today

> to

>> get her off of all the drugs. It is easier on her that way,

> rather

>> than going cold turkey and going thru withdrawal symptoms. Her

>> platelets are up today to the highest level since all of this

> began.

>> She is weak as a newborn lamb, but I am slowly getting my

> daughter

>> back. She won, and the arthritis lost.

>>

>> This is what I have learned about MAS, so maybe it will help

> someone

>> in the future. She caught mono and it threw her into MAS. Her

>> symptoms were a bad sore throat , swollen lymph nodes and a

> fever.

>> All probably part of the mono. One thing was different looking

>> back. She would drink and say that no matter how much she drank,

> she

>> was still thirsty. That was a clue that I knew nothing about.

> At

>> that time she was probably " third spacing. " I am no doctor, but

> this

>> is how I understand it. All of her vessels in her body were

> leaking

>> fluid. Not blood, but fluid. This fluid was going into " third

>> space " Spaces around the organs. The fluid went into her lungs,

>> around her lungs, and around her heart. So she would drink, but

> the

>> fluid just kept leaking around her organs. Thus her lungs filled

> up

>> and we had a life and death situation. Other than that, we had

> no

>> warning. The symptoms were like mono or the flu. I hope no one

> ever

>> has to go thru MAS on this listserve or anywhere else. It is no

>> fun. We have to find the cure. (n, 17, systemic)

>>

>>

>>

>> On Apr 13, 2006, at 10:01 AM, sonia1md wrote:

>>

>>> ,

>>>

>>> What exactly do you mean? Is this something that n needs

> now?

>>> Sorry to be ignorant but is donating blood the same thing as

>>> donating platelets or is that a different procedure?

>>>

>>> I am glad that the prayer service went so well and I am sure that

>>> you were blessed by it as well as those that attended.

>>>

>>> I am so sorry to hear that n doesn't just continue to

> improve

>>> and that there are times of backsliding mixed in with good news.

>>> How are her lungs today? I just can't even imagine how hard

> this is

>>> on you right now. The closest that we came to a situation like

> this

>>> was when Aundrea was 5. She fell on some rusty wire that impaled

>>> her leg. It went in about 12 " and required major surgery to

> remove

>>> it. They told us that they had to remove some of her muscle due

> to

>>> infection setting in and that they were going to be aggresive in

>>> order to prevent further spread of infection and possible loss of

>>> her leg. It was a horrific time and even afterwards when things

>>> finally stabalized that was when I went into a depression mixed

> with

>>> anxiety. Right now you are in survivor mode and doing everything

>>> you can to support n...The body can only stay in survivor

> mode

>>> for so long before it crashes. Do your best to get " some " sleep.

>>> Try to eat. I know its hard but this journey back to health is

>>> going to take n some time and you need to remain at

>>> least " physically " strong for her and for your other children.

>>>

>>> You have people all over this country praying for n and for

>>> your family! It is my prayer this day that n would really

> turn

>>> the corner and that her platelets would stabalize and her lungs

>>> would heal!

>>>

>>> Hang in there ....I so wish I could do more for you!

>>>

>>> (Aundrea 10 systemic jra)

>>> -

>>>

>>> -- In , Price <bc.price@> wrote:

>>>>

>>>> The prayer service was beautiful. They said that one can give

>>>> platelets for n, or sign up for the first CARRA race in the

>>>> nation here in Portland on June 11th. We need a cure.

>>>>

>>>>

>>>>

>>>> On Apr 12, 2006, at 9:11 PM, sonia1md wrote:

>>>>

>>>>> ,

>>>>> You just let me breathe a sigh of relief to hear some good

>>> news. So

>>>>> glad that the platelet count is stabalizing. It sounds as if

> the

>>>>> docs are really staying on top of everything and I am sure they

>>> will

>>>>> get that lung fungus problem cleared up...It must be so scary

>>> right

>>>>> now for n. I am glad that she can communicate a bit with

>>> you

>>>>> and sure hope that she is able to get off that vent by Friday.

>>>>>

>>>>> Of course our family will continue to pray and believe for

>>> n's

>>>>> healing. How did the prayer service at the highschool go. I

> am

>>>>> sure n will be so touched by all the support of her

> friends.

>>>>>

>>>>> God Bless,

>>>>> --

>>>>>

>>>>> - In , Price <bc.price@> wrote:

>>>>>>

>>>>>> He everyone, n woke up today and could communicate with

> us

>>>>> by

>>>>>> nodding. Her x ray has improved, and they are hoping that she

>>>>> can

>>>>>> come off of the vent on Friday. She now has a fungus in her

>>>>> lungs

>>>>>> that they are treating, and high blood pressure from the

>>>>>> cyclosporine. They will start her on methadone so she doesn't

>>>>> suffer

>>>>>> withdrawal from all of the pain meds. Her platelets have

>>>>>> stabilized . They are still very low, but no longer going

> down.

>>>>> So

>>>>>> we got some great news today. Thanks for all of the prayers.

>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>> On Apr 12, 2006, at 9:43 AM, sonia1md wrote:

>>>>>>

>>>>>>> ,

>>>>>>>

>>>>>>> we all really appreciate you taking the time to update us.

> You

>>>>> are

>>>>>>> a member of our jra family and you have so much support being

>>>>>>> extended to your family thru the power of prayer.

>>>>>>>

>>>>>>> I am glad that last night was a better night. Do you have

>>> family

>>>>>>> that have come to stay with your younger children? I hope

> your

>>>>>>> tangible needs are being met. All we know to do is pray...if

>>>>> there

>>>>>>> is something else that we can do, please let us know!

>>>>>>>

>>>>>>> Blessings,

>>>>>>> (Aundrea 10 systemic jra)-

>>>>>>>

>>>>>>> -- In , Price <bc.price@>

> wrote:

>>>>>>>>

>>>>>>>> Thank you to everyone for praying for n. I believe in

>>> the

>>>>>>> power

>>>>>>>> of prayer. n's high school is having a prayer service

>>> for

>>>>>>> her

>>>>>>>> tonight.

>>>>>>>>

>>>>>>>> n had a good night last night. I don't have the

> results

>>>>>>> from

>>>>>>>> the latest chest x-ray or labs. They lowered her oxygen a

>>>>>>> little.

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>> On Apr 12, 2006, at 6:45 AM, Carey wrote:

>>>>>>>>

>>>>>>>>> Cinday and n,

>>>>>>>>> I'm new to the board and had basically lurked alot, but I

>>>>>>> wanted

>>>>>>>>> to send you my prayers and support too. n sounds like

> a

>>>>>>>>> fighter, which is the most important thing of all. *HUGS*

> to

>>>>>>> you

>>>>>>>>> all in this trying time.

>>>>>>>>>

>>>>>>>>> Carey and Ben (5, still waiting to be diagnosed)

>>>>>>>>>

>>>>>>>>> Price <bc.price@> wrote:

>>>>>>>>> n is still on the ventilator and in ICU. Her lung x

>>> ray

>>>>>>> was a

>>>>>>>>> little worse today. She has developed an infection in her

>>>>> lungs.

>>>>>>>>> She is on two very strong antibiotics. She is more sedated

>>>>>>> today,

>>>>>>>>> because if she isn't she really fights and her oxygen

>>>>> saturation

>>>>>>> rate

>>>>>>>>> goes all to hell. Her labs are slowly improving. They are

>>> no

>>>>>>> where

>>>>>>>>> near normal, but for the most part they are now headed in

> the

>>>>>>> right

>>>>>>>>> direction. Her platelets have increased the last two

>>> readings.

>>>>>>> She

>>>>>>>>> had a pretty good day today.

>>>>>>>>>

>>>>>>>>>

>>>>>>>>> On Apr 11, 2006, at 9:19 PM, ajaomom@ wrote:

>>>>>>>>>

>>>>>>>>>> i am worried sick!!!!!!!!!! i just wish we

>>> would

>>>>>>> hear

>>>>>>>>>> something

>>>>>>>>>> soon.........keeping them all in my thoughts and prayers

>>> just

>>>>>>>>>> about without

>>>>>>>>>> ceasing...........

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>> Luv and hugs,

>>>>>>>>>> Aj and Holly (12 yrs old, systemic jra since 9/94)

>>>>>>>>>> _www.caringbridge.org/visit/holly_

>>>>> (http://www.caringbridge.org/

>>>>>>>>>> visit/holly)

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

[Guest guest]

Thank God - what a wonderful way to start Good Friday. n is my hero -

gotta get Hunter off to school. I am so happy for your family. Sandi

[Guest guest]

and MARIAN!!

I am so excited for you guys. Way to go n!!! I know the fight is still

there but in my eyes you are already a winner. Keep up the great work and

prayers will continue for a speedy recovery!!!

Donna

[Guest guest]

Sorry I forgot. n is like any teenage girl and likes clothes,

going to movies, and hanging out with friends. She likes track,

skiing, and running. She is a high jumper. I am sorry I can't be

more help. Her favorite color is purple.

On Apr 13, 2006, at 7:17 PM, hburger64 wrote:

> --,

>

> I know I have not posted much, but please know that my prayers for

> n have not faltered since she was admitted. Each time when i

> walk in from work in the mornings, the 1st thing i do is check the

> mail to see how she is doing.

>

> This must have been the worse week of your life. As the mom of a

> systemic kid this had hit too close to home and I have to commend

> you for being there for n and also taking the time to keep us

> all informed.

>

> I have taken your advise and printed out a bunch of info on MAS and

> placed it in Nicks medical file that goes with us everywhere. I l

> have also alerted my husband to the seriousness of MAS and seeking

> quick medical intervention. The infomation you have posted about how

> this started with n is priceless. I will also be printing out

> your last post to the list and adding it to the file.

>

> I am soo sorry you had to go though this and i am so grateful for

> you to even have the level headiness to think about posting to the

> list. THANK YOU!

>

> I asked earlier, but im sure you might have missed it. I would like

> to send n a care package when shes a little better and wondered

> what were her interests?

>

> How long do they think she will be in the hospital? what is the

> recovery time from this? can you develop MAS again? will she be on

> more medications long term? I know a lot of questions, sorry. But

> these are qestions i cant seem to find the answers to online.

> hearing about this 1st hand is worht more than 100's reports I can

> read online.

>

> Hang in there and tomorrow really will be " Good Friday "

>

> prayers always

>

> Helen and (8.systemic)

>

>

> ce <bc.price@...> wrote:

>>

>> n had to get a platelet transfusion several days ago.

> Giving

>> platelets is similar to giving blood, but it takes longer-about

> two

>> hours.

>>

>> We are going to have a very good " Good Friday " tomorrow. They

> will

>> pull the vent tomorrow at 8 am. n started methadone today

> to

>> get her off of all the drugs. It is easier on her that way,

> rather

>> than going cold turkey and going thru withdrawal symptoms. Her

>> platelets are up today to the highest level since all of this

> began.

>> She is weak as a newborn lamb, but I am slowly getting my

> daughter

>> back. She won, and the arthritis lost.

>>

>> This is what I have learned about MAS, so maybe it will help

> someone

>> in the future. She caught mono and it threw her into MAS. Her

>> symptoms were a bad sore throat , swollen lymph nodes and a

> fever.

>> All probably part of the mono. One thing was different looking

>> back. She would drink and say that no matter how much she drank,

> she

>> was still thirsty. That was a clue that I knew nothing about.

> At

>> that time she was probably " third spacing. " I am no doctor, but

> this

>> is how I understand it. All of her vessels in her body were

> leaking

>> fluid. Not blood, but fluid. This fluid was going into " third

>> space " Spaces around the organs. The fluid went into her lungs,

>> around her lungs, and around her heart. So she would drink, but

> the

>> fluid just kept leaking around her organs. Thus her lungs filled

> up

>> and we had a life and death situation. Other than that, we had

> no

>> warning. The symptoms were like mono or the flu. I hope no one

> ever

>> has to go thru MAS on this listserve or anywhere else. It is no

>> fun. We have to find the cure. (n, 17, systemic)

>>

>>

>>

>> On Apr 13, 2006, at 10:01 AM, sonia1md wrote:

>>

>>> ,

>>>

>>> What exactly do you mean? Is this something that n needs

> now?

>>> Sorry to be ignorant but is donating blood the same thing as

>>> donating platelets or is that a different procedure?

>>>

>>> I am glad that the prayer service went so well and I am sure that

>>> you were blessed by it as well as those that attended.

>>>

>>> I am so sorry to hear that n doesn't just continue to

> improve

>>> and that there are times of backsliding mixed in with good news.

>>> How are her lungs today? I just can't even imagine how hard

> this is

>>> on you right now. The closest that we came to a situation like

> this

>>> was when Aundrea was 5. She fell on some rusty wire that impaled

>>> her leg. It went in about 12 " and required major surgery to

> remove

>>> it. They told us that they had to remove some of her muscle due

> to

>>> infection setting in and that they were going to be aggresive in

>>> order to prevent further spread of infection and possible loss of

>>> her leg. It was a horrific time and even afterwards when things

>>> finally stabalized that was when I went into a depression mixed

> with

>>> anxiety. Right now you are in survivor mode and doing everything

>>> you can to support n...The body can only stay in survivor

> mode

>>> for so long before it crashes. Do your best to get " some " sleep.

>>> Try to eat. I know its hard but this journey back to health is

>>> going to take n some time and you need to remain at

>>> least " physically " strong for her and for your other children.

>>>

>>> You have people all over this country praying for n and for

>>> your family! It is my prayer this day that n would really

> turn

>>> the corner and that her platelets would stabalize and her lungs

>>> would heal!

>>>

>>> Hang in there ....I so wish I could do more for you!

>>>

>>> (Aundrea 10 systemic jra)

>>> -

>>>

>>> -- In , Price <bc.price@> wrote:

>>>>

>>>> The prayer service was beautiful. They said that one can give

>>>> platelets for n, or sign up for the first CARRA race in the

>>>> nation here in Portland on June 11th. We need a cure.

>>>>

>>>>

>>>>

>>>> On Apr 12, 2006, at 9:11 PM, sonia1md wrote:

>>>>

>>>>> ,

>>>>> You just let me breathe a sigh of relief to hear some good

>>> news. So

>>>>> glad that the platelet count is stabalizing. It sounds as if

> the

>>>>> docs are really staying on top of everything and I am sure they

>>> will

>>>>> get that lung fungus problem cleared up...It must be so scary

>>> right

>>>>> now for n. I am glad that she can communicate a bit with

>>> you

>>>>> and sure hope that she is able to get off that vent by Friday.

>>>>>

>>>>> Of course our family will continue to pray and believe for

>>> n's

>>>>> healing. How did the prayer service at the highschool go. I

> am

>>>>> sure n will be so touched by all the support of her

> friends.

>>>>>

>>>>> God Bless,

>>>>> --

>>>>>

>>>>> - In , Price <bc.price@> wrote:

>>>>>>

>>>>>> He everyone, n woke up today and could communicate with

> us

>>>>> by

>>>>>> nodding. Her x ray has improved, and they are hoping that she

>>>>> can

>>>>>> come off of the vent on Friday. She now has a fungus in her

>>>>> lungs

>>>>>> that they are treating, and high blood pressure from the

>>>>>> cyclosporine. They will start her on methadone so she doesn't

>>>>> suffer

>>>>>> withdrawal from all of the pain meds. Her platelets have

>>>>>> stabilized . They are still very low, but no longer going

> down.

>>>>> So

>>>>>> we got some great news today. Thanks for all of the prayers.

>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>> On Apr 12, 2006, at 9:43 AM, sonia1md wrote:

>>>>>>

>>>>>>> ,

>>>>>>>

>>>>>>> we all really appreciate you taking the time to update us.

> You

>>>>> are

>>>>>>> a member of our jra family and you have so much support being

>>>>>>> extended to your family thru the power of prayer.

>>>>>>>

>>>>>>> I am glad that last night was a better night. Do you have

>>> family

>>>>>>> that have come to stay with your younger children? I hope

> your

>>>>>>> tangible needs are being met. All we know to do is pray...if

>>>>> there

>>>>>>> is something else that we can do, please let us know!

>>>>>>>

>>>>>>> Blessings,

>>>>>>> (Aundrea 10 systemic jra)-

>>>>>>>

>>>>>>> -- In , Price <bc.price@>

> wrote:

>>>>>>>>

>>>>>>>> Thank you to everyone for praying for n. I believe in

>>> the

>>>>>>> power

>>>>>>>> of prayer. n's high school is having a prayer service

>>> for

>>>>>>> her

>>>>>>>> tonight.

>>>>>>>>

>>>>>>>> n had a good night last night. I don't have the

> results

>>>>>>> from

>>>>>>>> the latest chest x-ray or labs. They lowered her oxygen a

>>>>>>> little.

>>>>>>>>

>>>>>>>>

>>>>>>>>

>>>>>>>> On Apr 12, 2006, at 6:45 AM, Carey wrote:

>>>>>>>>

>>>>>>>>> Cinday and n,

>>>>>>>>> I'm new to the board and had basically lurked alot, but I

>>>>>>> wanted

>>>>>>>>> to send you my prayers and support too. n sounds like

> a

>>>>>>>>> fighter, which is the most important thing of all. *HUGS*

> to

>>>>>>> you

>>>>>>>>> all in this trying time.

>>>>>>>>>

>>>>>>>>> Carey and Ben (5, still waiting to be diagnosed)

>>>>>>>>>

>>>>>>>>> Price <bc.price@> wrote:

>>>>>>>>> n is still on the ventilator and in ICU. Her lung x

>>> ray

>>>>>>> was a

>>>>>>>>> little worse today. She has developed an infection in her

>>>>> lungs.

>>>>>>>>> She is on two very strong antibiotics. She is more sedated

>>>>>>> today,

>>>>>>>>> because if she isn't she really fights and her oxygen

>>>>> saturation

>>>>>>> rate

>>>>>>>>> goes all to hell. Her labs are slowly improving. They are

>>> no

>>>>>>> where

>>>>>>>>> near normal, but for the most part they are now headed in

> the

>>>>>>> right

>>>>>>>>> direction. Her platelets have increased the last two

>>> readings.

>>>>>>> She

>>>>>>>>> had a pretty good day today.

>>>>>>>>>

>>>>>>>>>

>>>>>>>>> On Apr 11, 2006, at 9:19 PM, ajaomom@ wrote:

>>>>>>>>>

>>>>>>>>>> i am worried sick!!!!!!!!!! i just wish we

>>> would

>>>>>>> hear

>>>>>>>>>> something

>>>>>>>>>> soon.........keeping them all in my thoughts and prayers

>>> just

>>>>>>>>>> about without

>>>>>>>>>> ceasing...........

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>> Luv and hugs,

>>>>>>>>>> Aj and Holly (12 yrs old, systemic jra since 9/94)

>>>>>>>>>> _www.caringbridge.org/visit/holly_

>>>>> (http://www.caringbridge.org/

>>>>>>>>>> visit/holly)

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

>>>>>>>>>>

[Guest guest]

cindy an marian, you are both in my prayers. i don't have a computer so i am a

little behind, but i thought you would like to know that ciarra and i are

thinking about you. stay strong and keep your head up. SHelly, and ciarra

Price <bc.price@...> wrote: Thank you to everyone for praying for

n. I believe in the power

of prayer. n's high school is having a prayer service for her

tonight.

n had a good night last night. I don't have the results from

the latest chest x-ray or labs. They lowered her oxygen a little.

On Apr 12, 2006, at 6:45 AM, Carey wrote:

> Cinday and n,

> I'm new to the board and had basically lurked alot, but I wanted

> to send you my prayers and support too. n sounds like a

> fighter, which is the most important thing of all. *HUGS* to you

> all in this trying time.

>

> Carey and Ben (5, still waiting to be diagnosed)

>

> Price <bc.price@...> wrote:

> n is still on the ventilator and in ICU. Her lung x ray was a

> little worse today. She has developed an infection in her lungs.

> She is on two very strong antibiotics. She is more sedated today,

> because if she isn't she really fights and her oxygen saturation rate

> goes all to hell. Her labs are slowly improving. They are no where

> near normal, but for the most part they are now headed in the right

> direction. Her platelets have increased the last two readings. She

> had a pretty good day today.

>

>

> On Apr 11, 2006, at 9:19 PM, ajaomom@... wrote:

>

>> i am worried sick!!!!!!!!!! i just wish we would hear

>> something

>> soon.........keeping them all in my thoughts and prayers just

>> about without

>> ceasing...........

>>

>>

>>

>> Luv and hugs,

>> Aj and Holly (12 yrs old, systemic jra since 9/94)

>> _www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/

>> visit/holly)

>>

>>

>>

>>