Before you start to read
this please clear your mind of any sympathy you may what to express
because that is not what I am looking for. Please understand I am not
looking any comments of I am praying for you and your family or any
form of similar stories you may have. I am not writing this for any
financial help however I am hoping you will share our story in hopes
a Doctor or surgeon will read this and agree to take my Mom as their
patient to get care.
My
Mom had a terrible time controlling her diabetes, she lost over 100
lbs by exercising and eating healthy however her blood sugar levels
were still between 300-445 consistently she was told she needed to
lose more weight and exercise regularly and it would help her health.
I remember the excitement my Mother had when we went a seminar about
having her bariatric surgery; I remember how the doctor said her life
would change, how she would have so much more life after surgery. I
never expected life would turn out the way it has for her.
My Mom had gastric bypass
surgery May 31st of 2011, by June she was on a down road spiral to
death. From the beginning my Mom complained of pain in her stomach
she would call the surgeon but could never get an appointment right
away which would then lead her to laying in bed or in the bath for
over 10 hours a day. My Mom eventually stopped answering the phone
and taking her medicine because even the pills and water would make
her sick and throw up.
By June 6th my Mom was in
the hospital with abdominal pain however the doctors convinced her
that is was a psychiatric issue and her pain was not real. Looking
back now I wish would have not believed then as my family and I would
end up having over 11 ER visits and 7 hospital stays from June -
December in 2011 alone.
Now yes my Mom does have
some psychiatric issues however I believe her issues are normal for a
woman who was left to raise 4 children on her own while holding 3
jobs and going to school to provide a life for her family. Also yes
my Mom also has suffered from Bulimia in the past this is something
she had done I believe to show her emotions because she had no voice
and no control in her life during that time this is no longer the
case.
My Mom continued to suffer
in pain until August when she decided she wanted to kill herself
because she could no longer handle the pain she was in on a
day-to-day basis. At that time the original surgeon agreed for her to
go back to Overlake hospital where she would be put on a feeding to
get nourishment and back to good health. We were all very thankful and
had high hopes for the care the doctor would provide.
My
sister and I left my Mom at the hospital so we could return to work promising
my Mom that we would return to pick her up. My Mom called us a few
days later to tell us that the doctor said she is suffering from
Bulimia again and he would help her get help. My Mom desperate for
relief was excited to get help, later that night my Mom called me
crying begging for us to pick her up because the only help he could
offer was in the psychiatric hospital. I'm not sure if any of you
have ever visited a psychiatric unit but it might be the scariest
place you will ever visit.
After that I was certain I
would be able to fix my Mom after taking many days off work, worried
I would lose my job I no longer cared and committed to taking an
entire week off to stay with my Mom in a controlled environment to
spoon feed her and give her medicine at a scheduled time. This was a
nightmare. I was able to see the pain my Mom had during the day and
she would sleep for very few hours, scream and cry from 6am to
11pm and still the doctors believed this pain was in her head.
My
days were spent that summer crying and researching ways to get her
better. My Mom spent her birthday that year in the hospital as she
would end up spending most of our birthdays and all holidays.
A doctor told me during
one of the hospital visits that this would be the worst year of my
life. It was.
On September 11th my Mom
had her first of many endoscopy's to stretch out her extremely narrow
esophagus this was so helpful and gave her much relieve for a little
while until she started having pain again and ended up on the
hospital on September 25th.
During September 25-29th my Mom was in the hospital and
I decided to rent a house where my Sister, her two Daughters, myself
and my Mom could live. This was one of the hardest decisions I have
ever had to make knowing it would break up the relationship of my Mom
and her boyfriend of 10 years but it had to be done my Mom was dying
living somewhere that she did not have 24hr care. If my Sister and I
live together with her I could take care of my Mom during the day and my Sister at night while I was at work. This was not only difficult
to move in together but it was difficult for both my sister and I to
leave our very selfish life and be very unselfish giving our lives to
our Mom.
My
Sister and I had very different ideas about how our Mom should be
cared for and this was hard but we both had the hope she would get
well soon and our dreams of taking walks with her, going on
vacations, playing outside with the kids would soon become a reality
for our family.
My three-year old niece has never known for my Mom to be
not sick. She has learned to become a caretaker for her grandma
constantly asking her if she's ok, if she needs anything or just
simply asking her how she's feeling these are not things a three-year
old needs to be concerned about for her grandma.
My
Mom was drastically getting sicker during the month of October she
was throwing up daily and complaining of stomach pain on an hourly
basis. My sister and I were consistently fighting, and sadly my
extended family was convincing my Mom and Sister that this was a
bulimia relapse and that she needed to get treatment. I was the only
one that did not believe this so it was convenient for these
discussions to go on while I was at work and many nights I would
come home to my Mom begging me to not send her away to treatment
because she said "I'm making myself throw up on purpose but it's
because the food is stuck in my throat".... "When I drink
water it feels like poison when it hits my stomach"
Now please keep in mind
when we would visit the ER they would just give her pain medicine and
send us home with paperwork saying "consult with original
gastric bypass surgeon" We would call the Doctor every time and
still he believed this was a psychiatric issue but that she has a
narrow esophagus but that would be corrected with her dilatation that
would happen every month.
My
Sister, Nieces and I spoon fed my Mom gave her medicine on a
scheduled time trying to get her better. We watched and listened to
her suffer, we were hopeless. I remember so many times telling my
Sister how she was probably going to die by the end of the year and
all because she wanted to be healthy.
The
night of November 13th I took my Mom into the ER because she had a
terrible cough and was suffering from the same abdominal pain. The
nurse that was in the ER was a nurse we had seen many times before
and she gave me her usual comment of "I still don't understand
why a doctor do a gastric bypass on a person with bulimia" The
room we were in was freezing cold and my Mom was screaming in pain
they did their usual blood work but the doctor refused to do a CT
scan or X-ray because Mom has just been in on Oct 16th for similar
issues and as the doctor had said "not much could have changed"
I believe the nurse probably had a good influence on the poor care my
Mom received that night from the doctor and we were sent home with no
result and my Mom still very ill.
That night my Mom was sick
all night she threw up what felt like buckets of saliva. I begged her
to let me take her back to the ER she said "no remember they
said nothing was wrong with me" I went to work on November 14th
and came home to my Mom in the same condition. My sister said she has
not stopped throwing up. On November 15th I helped put my very
weak Mom in the bathtub as I was watching her she turned completely
pale white and could not catch her breath. My Sister called 911 right away
and we had to lift her out of the bath by the time we got her out she
was no longer speaking when the paramedics walked in the door they
looked at her without even coming close to her and said "bring
the gurney" I was pretty sure my Mom was going to die that day.
When we got the ER the doctor was Theresa van der Vlugt, she was wonderful.
I remember her working so fast to figure out what was going on and I
also remember her whispering to the nurse "we need to get a
urine sample they never got one on the 13th and her white blood count
level was at 19 then they checked it again that night and it was
still at 19 and they sent her home" I've often wondered if they
would have done everything possible on the 13th and not thinking of
my Mom as a bulimic pain pill junkie perhaps they would have caught
something and my family would not have had to spend the next 40 days
in the hospital.
My Mom was put on a ventilator and sedated for over 18
days as she was not able to breathe due to aspiration pneumonia she
got from the saliva she was throwing up that went back into her
lungs. The days were terrible daily the doctors would do a chest
X-ray and explain to me how she was not getting better and gradually
getting worse. I need a lot of support but sadly many people in my
life thought the kind of support I needed was the push to make me
also believe that my Mom needed to be in an eating disorder
treatment. I did not believe this.
Many of the people I cared
for in my life put together a "family meeting" to tell me
that it was a 40% chance of my Mom coming out alive from the ICU and
they explained to me how I could not longer help her and she needed
real care. I felt broken. My Mom was upstairs dying and I was here
still trying to research answers, no one was helping find an answer
and I felt as if everyone was against me. I felt I had no other way
but to give into their beliefs. I still feel disgusted I let myself
give in, I still feel I let my Mom down by believe she was doing this
to herself. Sadly this has destroyed the way I feel about most of the
people who were in that room, only to show their support at that
moment but have no idea the day-to-day pain my Mom goes through.
On thanksgiving day the
ICU doctor told us that if my Mom wanted to live that she would need
to start fighting she must have heard him because that day she
started to wake up but sadly that night the doctor informed us that
she was on her last hours. Miraculously she lived.
After getting out of the hospital my Mom was in a
nursing home for sometime and she hated it until we got her out. We
had a GI doctor in Bellingham take over so she could continue to get
endoscopes until she could no longer get anymore because of her
esophagus tearing open on the last endoscopy the doctor informed me
that her connection between the esophagus and stomach is completely
closed up and need to get fixed with a revision of surgery. Funny
thing is we were told this by a different doctor in August of 2011
and the original surgeon said that was not the case but now things
were different and we took the advice of this new doctor and got a
referral to the UW medical center to get a revision. My Mom was so
happy and excited to perhaps have a normal life. My Mom has not been
able to eat real food since February 2011 because she has been with a
feeding tube due to her stomach being closed. My Mom has had over 30
hospital and ER visits in 2012
The
doctor we have now is wonderful but not a surgeon, He is a firm
believer that my Mom is not bulimic but is throwing up because
anything that she tries to eat she will throw up because her stomach
is completely closed up.
At this point My Mom has
been waiting for a revision but the UW Medical Center is telling her
they want her healthy for 3 months. How can she be healthy if she
cannot control her blood sugar levels herself and she cannot control
her blood pressure herself because she is not able to eat or drink.
Her pain is consistent because she need the revision, she will never
be healthy because she needs to get the surgery revised to get
healthy.
Most of you may be asking why I am sharing so much. I am
doing this because we are now desperate for help in hopes that a
doctor will read this and offer their help with a referral or with a
revision of surgery. I fear my Mom will not have much longer and she
has already missed out on so much.
Recently my other sister
has been staying with us and seen how my Mom struggles daily below is
my Sister's perspective...
I'm sitting here listening
to my Mom in the shower for the second time this morning crying and
praying for relief from her pain. I'm appalled at the length of time
my Mom has had to deal with the pain in her abdomen area. There isn't
any relief for her. She is consistently in bed and has a hard time
going any where, because she hurts so much. Yesterday she tried to go
with her friend to do errands, and she had to come home. I was in her
room, she came in doubled over in pain she went and took a shower and
laid down and fell asleep with a heating pad.
When my Sister and her two
girls came over, my Mom had to stay in bed because she was hurting so
much. My 3 year old niece had to visit her grandma in her grandma's
bedroom. My niece is smart enough to know when my Mom is “sick”.
She hovers by my Mom when my Mom is crying. We try to shield my niece
from as much ad we can but my Mom's pain is constant. If we shielded
my niece all the time she would never see her grandma.
My older niece wanted my
Mom to come to her pinning party as a Mary Kay Representative, she
called me to “see how grandma's doing today because I wanted her
to come tonight” My Mom tries to be there for her , but the
difficulty of being positive and hiding her pain for a few hours
causes more stress on my Mom physically, mentally and emotionally.
This morning, I broke down
crying out of frustration. There is ABSOLUTELY NOTHING we can do to
help her for relieve her of any discomfort. That's something that
only professionals can do. It's not happening quick enough for her,
and her quality of life is suffering. She is also very depressed and
cries a lot . Her friendships and outing have been affected. My
question is.. When is enough, enough? When will her treatment become
a priority? When can she get a better quality of life?
If you can help or offer advice please email me at MilagroSpeaks@gmail.com
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