[tri-med] Re: Joanna's Birthday Update - Long

I always think that "when things settle down," "when we can get back on a 
routine," it will get easier.  I guess there's always something.  So, I should 
forget about getting back to a routine.
 
When Hurricane Ike passed through the Gulf Coast, we where there, or rather 
here and still are here.  Of course, the electricity was the first thing to go 
out.  My husband gets all naggy, worried, and nervous.  I can't handle his 
stress and my own.  So, I threw him outside and told him to take care of the 
generator and to not let the hurricane mess it up.  Then I locked the door to 
make sure he didn't try to come back inside.  Nothing happened to him and most 
importantly, nothing happened to the generator. LOL  Oh, don't worry, I let him 
back inside the next day. :)
 
I'm glad that your daughter, Joanna, is doing well.  That you have been doing 
this for thirty four years is amazing.  You're a strong,strong, strong ,,,,, 
strong person.
 
Annette
--- On Mon, 10/13/08, BHASSANJR@xxxxxxx <BHASSANJR@xxxxxxx> wrote:

From: BHASSANJR@xxxxxxx <BHASSANJR@xxxxxxx>
Subject: [tri-med] Re: Joanna's Birthday Update - Long
To: tri-family@xxxxxxxxxxxxx, tri-med@xxxxxxxxxxxxx
Date: Monday, October 13, 2008, 12:26 PM

Dear Everyone,
       Joanna is WELL and HAPPY.  That's the most important thing.  She is 
full of smiles, especially when her cheek is rubbed.  And she is spoiled by us 
and all her caretakers.
       The bad, heart breaking news is that she is no longer home, but at a 
lovely nursing home about 10-15 minutes away from us, where Boni and I go visit

every day. It was, if not my fault, but my problem that started this when I 
broke my foot getting out of a chair half asleep, last December.  I managed ok 
for 2 weeks with a soft cast, but woke one morning screaming with SEVERE back 
pain, could not care for or medicate Joanna (nor could husband, Boni) just 
called 911.  When they arrived they were all set with ambulance but when told
of 
Joanna who was already showing signs of seizure, they agreed and ordered a 
second one for her.  I told them she should go  to PICU as they knew her well, 
and she had been there 2 months before with pneunomia.  Luckily Joanna's
big 
sister Mary is a social worker and raced down for me and Joanna.  She was able
to 
get slot at nursing home for "social admit"? for Joanna to nursing
home, the 
next building down from hospital (same ownership) as neither she or Boni could 
handle Jo's care and we had been trying to get nursing help for YEARS to no

avail.  
       My problem it turns out was pneumonia and blood clots - not too 
unusual with foot injuries I was told.  I was kept for 2 weeks in and out of 
consiousness and full of morphine (horrid stuff), then sent to rehab for 2
weeks, was 
packed and ready to head home when I started diahrrea and vomiting dark brown 
coffee ground material (dried blood), was sent to another hospital and kept 
another week - apparently meds given for blood clots reacted with those for 
esophageal ulcers that had been found before all this started.  Another week 
passed  while they figured out I still had at least one/maybe more blood clots
in 
my left leg, and recommended a vena cava filter be placed so as to capture any 
clots that might cause problems.  Once I agreed that was done with no 
problems (usually an outpatient procedure with only light anesthetic,
you're awake 
the whole time).        
       I THEN was ready to go home and get Jo and life back to normal and 
start 2 months of physical therapy.  What I didn't know was that Boni (age
72) 
had now been diagnosed with Parkinson's, and now everything crashed. 
He's doing 
better with medication, but it's definitely affecting him.
       We tried to work a deal to have AHRC day program Jo's been in all
her 
life pick her up and return her to the nursing home which was amenible but 
AHRC couldn't - (would have to split Medicaid reimbursement ?), so
she's missing 
a lot of the socialization and the staff there REALLY MISS HER also, nursing 
home is trying but not the same.  Jo seems to have adjusted well, but lights up

when we come in, not upset when we leave.  The residents refer to Jo as
"The 
Baby"  and love to make her smile.  Doctors and nurses call with any
problem 
or concerns, and they do listen when we tell them what is/is not usual for Jo. 

They want her to keep her own doctors (except primary who is now the nursing 
home doctor) and order an ambulette and driver to take Jo and us to 
appointments. She was back in hospital for a week in March with pneunomia - now
hospital 
is giving us a fight as she has always been in pediatric, now they  want her 
in adult wards where first thing they have to do is find small diapers, gowns, 
masks, learn how to use MicKey button - which I point out everyone in peds 
knows and has!!!!!  But adult she now is to them, all 80 pounds of her. 

       Tomorrow we'll be taking birthday cake over to nursing home,
Jo's old 
primary      doctor who first saw and diagnosed her at 4 months, and, if time, 
to AHRC as well.  I plan on being  first in line for "Elmo Live"
which I 
think Jo will LOVE! when it's released tomorrow am (a definite omen she HAS
to 
have it).  Family was coming yesterday, but we put it off til next Sunday as we

had plumbing problem.  

       Things we did do right - thanks to push from AHRC :

       We did go to court when Joanna was 18 and Boni, I, and Mary were all 
appointed her legal guardians, with his sister as standby guardian.  So Mary 
had no problem in signing papers, etc for Jo's admission to hospital,
nursing 
home care.

       We made sure that Joanna got Medicaid at 18 ( waiver had come in just 
a few months before so we just waited and got full Medicaid, which backed up 
his health care from work.  When Boni retired at 65 he (and Joanna) received 
Medicare now primary, his work policy from United Health care (now questionable

for Jo's over age for dependents - is being reviewed) , and then her
Medicaid. 
 Medicare and secondary picked up nursing home costs for first 100 
days($400/day!-Ouch) then it all goes to Medicaid.

       Also, when Boni retired at 65 he started receiving Social Security.  
Joanna  received Social Security (and SSI) as his dependent( SS now goes to 
nursing home,no SSI any longer), and I started collecting Social Security as
well 
(I was 55 at that time) because I was Joanna's primary caretaker.  

       Believe it or not AHRC instituted a Life Insurance program for its 
workers probably 10 years ago - just $5,000, I think.  It was raised a few
years 
ago to $7,500, for less than $80 yearly premium.  We were, because of that 
policy able to switch (because Joanna is no longer with AHRC), to another
policy 
at the same company with no physical/medical questions for the same face 
value, just about double the premium, which for our kids is great.  So some of
you 
with older kids, might check their programs and suggest this?

Love to you all,

Chris, Mom to Joanna T-18, 34 years tomorrow



       


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