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

Chris,
You and your daughter are truly amazing.
Bless you all and hope you are feeling better soon.

Debbie and Claire (T18)

On Mon, Oct 13, 2008 at 1:26 PM, <BHASSANJR@xxxxxxx> wrote:

> 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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>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
>


-- 
Reputation is what men and women think of us; character is what God knows of
us.
Thomas Paine


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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