My Mother..

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