Re: Re: Cyndi/Update Burns released Hospital/Warning Length...

[Guest guest]

hi Cyndi so glad to hear is home what a scary scary experience I

cant even imagine went you went through i hope you are able to get the

help you need at home I also wanted to let you know that if his diarrhea

continues you should have him checked for c - diffaseal (spelled very wrong

lol) as this happens if you have been in a hospital and or have been on

antibiotics and it can even happen months later my son Ethan has had it

3 times its easily treated but can get very bad before it is

diagnosed please take care i will continue to pray for you god bless

Debby

In a message dated 7/7/2011 11:39:20 A.M. Eastern Daylight Time,

brendamcdonnell@... writes:

Hi Cynic,

Our prayers continue for you, and the rest of your family. This is

like the trials of Job, honestly, you deserve a break. Is there anyone that

can offer you respite? Hugs,

To:

From: cynthiamiltonburns@...

Date: Thu, 7 Jul 2011 05:10:20 +0000

Subject: Re: Update Burns released Hospital/Warning

Lengthy explanation of test/treatme

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.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 Â

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

>

> 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

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

[Non-text portions of this message have been removed]

------------------------------------

--------------------------------------------------

Checkout our homepage for information, bookmarks, and photos

of our kids. Share favorite bookmarks, ideas, and other information by

including them. Don't forget, messages are a permanent record of the archives

for our list. http://groups.yahoo.com/group/

--------------------------------------------Yahoo! Groups Links