Re: Cyndi/Update Burns released Hospital/Warning Lengthy explanation of test/treatme

[Guest guest]

, No we have no one at this time.Yes we need a break. Thanks for the

prayers. Cyndi Burns

> >

> > Cyndi,

> > So glad to hear that is home. And also glad that your daughter is

fine.Â

> >  I am so sorry to hear about the horror you went through.  You

definitely need

> > a break from all the stress. .

> >

> > Regarding the lost muscle tone, the hospital should send a physical

therapist to

> > the house through the Visiting Nurse Service. Not sure how it works in

your

> > state.  When was in the hospital last month, the case manager at

the

> > hospital arranged for a physical therapist to come to the house along with

the

> > visiting nurse. That service is only temporary (a few weeks), but then

they

> > refer him to an agency which handles longer term physical therapy. In our

case,

> > there will be a 4 week gap, but it looks like someone will be coming to the

> > house the week after next. In addition, if you want, they could send a

home

> > care worker a few days a week to help with bathing, walking, his

laundry,

> > etc.Â

> >

> >

> > I hope and pray for a complete recovery for and some much needed  rest

and

> > peace of mind for you.

> >

> > Irene

> > sister to

> >

> >

> >

> >

> > ________________________________

> > From: cynthiamiltonburns <cynthiamiltonburns@>

> > To:

> > Sent: Wed, July 6, 2011 3:01:06 PM

> > Subject: Update Burns released Hospital/Warning Lengthy

> > explanation of test/treatme

> >

> > Â

> > Group was released from the hospital yesterday. We are exhausted. I

want to

> > thanks each and everyone of you who prayer, tried to help from a far,and

wrote

> > in concern of . I was told that they do not know what was wrong with

,

> > they may never know, but they helped him recover. I felt like an episode of

> > Mystery Diagnosis. Lots of test were Done with results coming back negative.

> > 's Disease,Mono,CMV,any kind of infections(white blood count was

> > normal)Thyroid TSH,T3,T4 so his T3 was a little low at 0.38 and normal was

..9.

> > The ANA test for Lupus came back positive however that test can have a false

> > positive so they are doing additional testing that takes 1-2 wks to come

back.

> > Hasimoto's Thyroiditis came back negative. His Ferrintine Levels were

extremely

> > high as in 21,981 and it was a signal to HLH so they tested for that but

again

> > it takes 1/2 weeks. His liver enzymes to start off were in the 7,000 as

normal

> > in in the low hundreds his ALT was 7,7000 and AST was 5,500 and his kidneys

and

> > adrenal glads were failing. Now he went into the hospital with pneumonia,

> > aspiration pneumonia on Sunday June 19th, by Monday June 20, he was doing

better

> > and moved out of ICU within hours was having difficulty breathing and

moved

> > back to the ICU. The Dr. told me that would have to be place on a BPap

> > maching and in the near future possibly a ventilator. As the Dr. and I were

> > speaking 's BP started dropping, 60,50, 40 and the Dr. yells get the

paddles

> > and they are doing CPR. I was watching the screen praying that he did not

flat

> > line. was placed on a ventilator and me asking what the happened. How

did

> > he go from getting better to almost dying. The Dr. said what could have

happened

> > is the med that they gave to put him to sleep can cause a drop in blood

> > pressure(BP)so that could be what happened. After lost oxygen to his

liver,

> > kidney, and adrenal glads those organs were sickened that quickly. The Dr.

> > researched prior labs for and said his liver,kidneys and adrenal glads

did

> > not show any sickness prior to hospital admit so they believed all of that

> > happened due to the med they gave him. Pretty scary I almost lost him

because of

> > their negligence.They could have been ready with dopamine to bring his BP

back

> > up and he would not have arrested to my understanding. While we are glad to

be

> > home I am still worried about as he is not sleeping, and still having

> > diarrhea, etc. They did find a crack and fluid on his right hip as I suspect

> > that was because he fell out of the bed in Our Lady of Peace back in March.

> > has lost muscle mass and I did not realize this until we left the hospital

and

> > was walking. I have to find out what to do to help him regain muscles.

> > Cyndi Burns

> >

> >

> >

> >

> >

> >

[Guest guest]

, No we have no one at this time.Yes we need a break. Thanks for the

prayers. Cyndi Burns

> >

> > Cyndi,

> > So glad to hear that is home. And also glad that your daughter is

fine.Â

> >  I am so sorry to hear about the horror you went through.  You

definitely need

> > a break from all the stress. .

> >

> > Regarding the lost muscle tone, the hospital should send a physical

therapist to

> > the house through the Visiting Nurse Service. Not sure how it works in

your

> > state.  When was in the hospital last month, the case manager at

the

> > hospital arranged for a physical therapist to come to the house along with

the

> > visiting nurse. That service is only temporary (a few weeks), but then

they

> > refer him to an agency which handles longer term physical therapy. In our

case,

> > there will be a 4 week gap, but it looks like someone will be coming to the

> > house the week after next. In addition, if you want, they could send a

home

> > care worker a few days a week to help with bathing, walking, his

laundry,

> > etc.Â

> >

> >

> > I hope and pray for a complete recovery for and some much needed  rest

and

> > peace of mind for you.

> >

> > Irene

> > sister to

> >

> >

> >

> >

> > ________________________________

> > From: cynthiamiltonburns <cynthiamiltonburns@>

> > To:

> > Sent: Wed, July 6, 2011 3:01:06 PM

> > Subject: Update Burns released Hospital/Warning Lengthy

> > explanation of test/treatme

> >

> > Â

> > Group was released from the hospital yesterday. We are exhausted. I

want to

> > thanks each and everyone of you who prayer, tried to help from a far,and

wrote

> > in concern of . I was told that they do not know what was wrong with

,

> > they may never know, but they helped him recover. I felt like an episode of

> > Mystery Diagnosis. Lots of test were Done with results coming back negative.

> > 's Disease,Mono,CMV,any kind of infections(white blood count was

> > normal)Thyroid TSH,T3,T4 so his T3 was a little low at 0.38 and normal was

..9.

> > The ANA test for Lupus came back positive however that test can have a false

> > positive so they are doing additional testing that takes 1-2 wks to come

back.

> > Hasimoto's Thyroiditis came back negative. His Ferrintine Levels were

extremely

> > high as in 21,981 and it was a signal to HLH so they tested for that but

again

> > it takes 1/2 weeks. His liver enzymes to start off were in the 7,000 as

normal

> > in in the low hundreds his ALT was 7,7000 and AST was 5,500 and his kidneys

and

> > adrenal glads were failing. Now he went into the hospital with pneumonia,

> > aspiration pneumonia on Sunday June 19th, by Monday June 20, he was doing

better

> > and moved out of ICU within hours was having difficulty breathing and

moved

> > back to the ICU. The Dr. told me that would have to be place on a BPap

> > maching and in the near future possibly a ventilator. As the Dr. and I were

> > speaking 's BP started dropping, 60,50, 40 and the Dr. yells get the

paddles

> > and they are doing CPR. I was watching the screen praying that he did not

flat

> > line. was placed on a ventilator and me asking what the happened. How

did

> > he go from getting better to almost dying. The Dr. said what could have

happened

> > is the med that they gave to put him to sleep can cause a drop in blood

> > pressure(BP)so that could be what happened. After lost oxygen to his

liver,

> > kidney, and adrenal glads those organs were sickened that quickly. The Dr.

> > researched prior labs for and said his liver,kidneys and adrenal glads

did

> > not show any sickness prior to hospital admit so they believed all of that

> > happened due to the med they gave him. Pretty scary I almost lost him

because of

> > their negligence.They could have been ready with dopamine to bring his BP

back

> > up and he would not have arrested to my understanding. While we are glad to

be

> > home I am still worried about as he is not sleeping, and still having

> > diarrhea, etc. They did find a crack and fluid on his right hip as I suspect

> > that was because he fell out of the bed in Our Lady of Peace back in March.

> > has lost muscle mass and I did not realize this until we left the hospital

and

> > was walking. I have to find out what to do to help him regain muscles.

> > Cyndi Burns

> >

> >

> >

> >

> >

> >