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

[Guest guest]

I'm soooooo happy he is home I hope he can recover from all this resting home,

but it's awful not to know what happened to him during that time in the

hospital. Hope you and your family get the rest you all are in need of ) lots

of Hugs

>

> 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]

& Bobbie, While it is nice to be home it would have been nicer to have

the nurses to help clean up the diarrhea. Taking care of with that at the

hospital was easier because I had help and I did not have to clean it off

furniture, flooring and bedding. I am glad for him to be well enough to come

home but I am still very worried about him. Thanks for praying for him. He needs

it very much. Cyndi B

> >

> > 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]

Cyndi: Can't the docs call in home health aide help for you???

Liz

On Wed, Jul 6, 2011 at 9:49 PM, cynthiamiltonburns <

cynthiamiltonburns@...> wrote:

> **

>

>

> & Bobbie, While it is nice to be home it would have been nicer to

> have the nurses to help clean up the diarrhea. Taking care of with that

> at the hospital was easier because I had help and I did not have to clean it

> off furniture, flooring and bedding. I am glad for him to be well enough to

> come home but I am still very worried about him. Thanks for praying for him.

> He needs it very much. Cyndi B

>

>

> > >

> > > 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

> > >

> >

>

>

>

--

*Liz*

Let me win, but if I cannot win, let me be brave in the attempt. - Special

Olympics Motto-RIP Eunice Kennedy Shriver

“When we long for life without difficulties, remind us that oaks grow strong

in contrary winds and diamonds are made under pressure.-Author Unknown

" Knowing trees, I understand the meaning of patience. Knowing grass, I can

understand persistence. " - Hal Borland

[Guest guest]

Liz, I called the Dr.'s office today with questions and the person who called me

back answered the questions but I had more and asked for the Dr. to call me

back. No one called back. I have an appointment tomorrow with a new

Pediatrician that sits on the board for Down Syndrome of Louisville. Once again

I am trying to switch Dr.'s for . Char said to ask for one before we left

the hospital but had stopped the bathroom issues and then late last night

restarted them. SOOO sorry I did not ask before I left the hospital with him.

Cyndi B

> > > >

> > > > 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

> > > >

> > >

> >

> >

> >

>

>

>

> --

> *Liz*

>

> Let me win, but if I cannot win, let me be brave in the attempt. - Special

> Olympics Motto-RIP Eunice Kennedy Shriver

>

> " When we long for life without difficulties, remind us that oaks grow strong

> in contrary winds and diamonds are made under pressure.-Author Unknown

>

> " Knowing trees, I understand the meaning of patience. Knowing grass, I can

> understand persistence. " - Hal Borland

>

>

>

[Guest guest]

Cyndi,

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

fine. 

 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. 

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

peace of mind for you.

Irene

sister to

________________________________

To:

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

Subject: Update Burns released Hospital/Warning Lengthy

explanation of test/treatme

 

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]

Irene, Thanks for the ideas on a visiting nurse. Char had recommended that to me

also but I did not request that before leaving the hospital. So sorry I did not.

I asked for physical theraphy while he was in the hospital to show me what to do

and they said they ordered it but no one ever came to his room. just fell

through the cracks. Cyndi Burns

>

> Cyndi,

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

fine. 

>  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. 

>

>

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

and

> peace of mind for you.

>

> Irene

> sister to

>

>

>

>

> ________________________________

>

> To:

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

> Subject: Update Burns released Hospital/Warning Lengthy

> explanation of test/treatme

>

>  

> 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

>

>

>

>

>

>