First be warned that my grammar is all over the place. I have been trying to get all this "vomit" out and on paper for several weeks. I am too emotionally tired with the past and we need funding. So I did the best I could in my situation. The past 30 months or at least some key points. If you feel the need to judge me, please don't even bother reading.
Oh and it is really long and I am not sorry this is my life.
And we are still waiting to hear if Mason has "Smith-Magenis Syndrome" and still waiting for formal "Autism Diagnose".
Here it is.
October 15, 2010
To the At-Home Program,
We are applying for my son, Mason. Mason has been let down by our Governments Health Care System and we as a family have been let down. We have almost lost our son both from medical negligence and from Government neglect. Our family and everyone who ever here’s of our situation is appalled with how are family has been dealt with in multiple systems. We have told alot of people. We will continue to tell everyone what is happening to our family until we are heard. Until someone helps our son. We have been let down, beaten and we are bruised. Doors have been slammed in our faces repeatedly and we are being let down. This Country is supposed to have a Universal Health Care. We have seen very little of what “Universal Health Care” should be. Our family has been let down in the following ways.
* By 5 months old Mason had been hospitalized three times for a total of 5 weeks. All due to “viruses” and when I repeatedly told the Dr. Mason was having problems with feeding he ignored my concerns.
• At 7 weeks old I went to a Public Health Nurse for help with Breast feeding. Mason wanted to eat every hour of everyday. He was unable to successfully latch and take adequate amounts. We referred to The Vancouver Breast feeding Clinic, where we saw several Drs. They decided after several weeks that Mason had reflux, needed his tongue tie released and that he was going to be a difficult eater. They could no longer help me.
• Several ER visits trying to tell them something wasn’t right (SMH) finally at 5 months old a Dr. in the ER plotted Mason on the growth chart and referred us back to Dr. Ramesh(PED)
• At 5 months, 1 week, Mason was hospitalized for a two week period due to “failure to thrive” At this time he worked with Sandra from the feeding team at SMH, Dr. Ramesh wanted him to be fed primarily with high calorie formula. It took two weeks and alot of work, but Mason finally started taking a bottle and they said that was his only problem. Sandra saw no problems with anything even though he chocked and gagged at every feed. The Dr. even wanted us to use a cleft palate bottle, “to poor the milk down the back of his throat”. He would take up to 3 ounces a time so it was improvement. We also tried rice cereal at this time, Mason reacted with hives and the dietician decided to wait until 7 months to start any solids. Mason wasn’t very keen on starting them anyway! The SMH feeding team saw no reason to continue with Mason. But Mason did have a swallowing problem. Also while I was there since I was right next to the Nurses Station I heard everything they said about me. At shift change over the nurses continually said: “The mother is the problem” and “They should take this child from her”. Sandra also made these comments while in our room, saying it was me. I was causing this. I new in my heart I wasn’t, but I felt feeling like a terrible Mother. I felt defeated and because of this I wasn’t as vocal as I should have been. At least until now.
• At this time in the Hospital he was put back on reflux meds (Ranitidine)– referred to GI at Children’s Hospital
•
Mason saw Dr. Gudrun Tonskamper (
www.naturalhealthclinic.ca
• At 6 months Dr. Ramesh decided that Mason should be seen at Children's in the Gastro dep. Mason started seeing Dr. Israel with the immediate response by that something wasn’t right Dr. Israel decided a upper gi scope was needed.
• End of Sep 08 seen by GI – swallowing study ordered, 6 months – 1 year wait we are told.
• GI Scope was done end of November – No findings by GI
• Dec 5/08 – Mason began with diarrhea 12 x a day
• Left messages, couldn’t get ahold of live person at Children’s GI Clinic or Drs. office until Dr. appt. Jan 08/09 -I should have gone and sat in their waiting rooms.
• In this time went to ER at Children's. Dr. told me “kids wear their health on their sleeve” told me to go home he was fine. HE WAS NOT FINE.
• I finally got a hold of a live person in January 2009 and Mason was seen at Dr’s office.
• The Dr. weighed Mason and said “Oh Shit”, I said “YEAH OH SHIT it right. Why wasn’t I able to book an appointment. Dr. was worried “Failure to Thrive” was worse, contacted Children’s. He knew Mason was going to need a feeding tube but didn’t tell us.
• Mason was seen at children’s the next day, GI clinic. We were told Mason had fallen through the cracks at Surrey Memorial Hospital. He was at the point of needing a G- tube. He was dying and there was no other options. I didn’t even know what a G-tube was. There had never been talk of anything even closely related. We were in shock, we left with no info other than our son would be hospitalized as soon as they could book the surgery. There was a 3 month wait but they were going to try to get it done as an emergency surgery. We had no information about what our son was about to go through. We were led to believe that Mason would be covered and not worry about it. The Dr. said it would be fine. It was NOT fine.
• At that time were told to send them our extended insurance to see if they would cover anything. (Manulife does not cover children for tube feeding in my husband’s policy)
• Mason saw Dr. Yu (Allergist) He had no allergies to milk, soy, corn, wheat, or ?(wheat like) Just to rule out allergies were the cause of his diarrhea. She also suspected a swallowing problem and put her own referral to Children’s for a feeding study.
• After 4 weeks of waiting mason lost ½ pound in one week which is substantial in a 16 lb.11 month baby. We were told he needed to be hospitalized for a NG-tube immediately. There were no beds a SMH for 7 days. We went for another booked appointment at Children’s GI Clinic. He was admitted to Children’s the next day Feb 11/09. Our son had faded away both physically and emotionally.
• He received a NG-tube that night.
• Surgery Feb 15/09 for emergency G-tube placement
• I asked for Astrid, an occupational therapist came to see us, she suspected a swallowing difficulty. Bed side assessment was done. Mason’s feeding study was booked for the following Friday.
• Friday Feb 20 – Mason had his feeding study. It showed signs of aspiration on thin liquids and penetration with thickened liquids and some foods.
• So on the Drs. orders and on the “OK” of an OT (Sandra) at SMH we had been pouring liquids straight into my son’s lunges for almost a year. A year were I begged for help. A year were I got blamed for his “issues”. I had been slowly drowning my son every hour of the day for 11 months. I am heartbroken and disgusted that this was left to go on so long. That I as his mother had been “causing” this, that I as his Mother had let the Dr. ignore my worries. Do you understand what it feels like swallow your coffee the wrong way? I was causing that pain for a year, Mason was being tortured for a WHOLE year. Because a Dr. told me to pour the formula down the back of his throat.
• Mason would have needed A G-tube anyway, after they had found the aspiration. Should have been found a lot earlier. Surrey has the equipment to this test but is unable to perform the test on children due to time constraints.
• What hurts the most is all the docs have written in their reports that the swallowing study was the reason Mason got the G-tube. When really in was neglect. And it was me asking for the OT to come see us. He got the G-tube because he was dying. The Drs. decided to cover their behinds and it’s disgusting.
• While we were at Children’s we were given a Social Worker to help us get funding. On the first visit I had to ask for Mason to be removed from the room while we talked because of her language. Swear words were not acceptable in front of my child. On the second visit she told me that I had to be careful because the “ward” we were on is known for sending you home with nothing. “No supplies and no knowledge”. This was the day of my Son’s surgery. We still had little knowledge about G-tubes and this just made me upset. She also brought up me having an abortion. I was at the time pregnant with our third, I was 21 weeks along. After I asked her to stop and that I wasn’t interested she kept talked about how I should have an abortion, b/c I wouldn’t be able to handle Josh, Mason, and Carter. I told her I had several miscarriages and Abortion was not an option that I wanted or agreed with. This went on for a couple social service visits in our hospital room. I told her I was so far along anyways to get her off my back. She then told me she could have it arranged for special circumstances. After her third visit of not stopping pushing the Abortion issue I asked for a new social worker. I wasn’t given a one until 4 weeks later after fighting at the very top of the chain. I told them that I would go to the news if they didn’t give me one within four hours. And they gave me one. Just one who didn’t know anything about funding. She then closed our file due to being unable to help us. We knew very little about the Medical world or the funding we were going to have to get.
• The following Monday we went home with emergency funding from variety. Funding our needs until June /09. They rented our pump, gave us bags, thickener and some extensions . I was told I would have to re-apply for June 2009 onwards. We had no funding until November 2009, now we have partial funding from Variety for the next year.
• After being home for 1 ½ weeks from G-tube placement, Mason was hospitalized after having a site infection. After this surgery due to some kind of stomach issue?????
• Social Services then called. We were being investigated for parent neglect. They later told us a Charity that the first Social worker had applied to for us called them. They decided that there wasn’t a protection issue but there was a social issue. So they arranged for Josh to go into Daycare and while we arranged at Home care. They told us to hire someone to help in the home with Joshua and Mason. We went to a Nanny agency paid the “dues” as the Social worker told us too. We had funding and help for 3 months. We had been told we would have help for as long as we needed it before Mason went into school. Our case file got shut “by accident” and couldn’t be reopened. We had 7 nannies in a 6 month period. No one has been able to handle Mason thus far. Since the government stopped helping and we can’t afford our day to day life. We never pursued trying another Nanny.
• Our application to AT HOME program for Mason was then denied.
• We got a call from Dr. Ramesh’s office telling us we needed a new Pedi and they would be referring us else where. Dr. Ramesh would be taking on a new position at SMH as a the Head of the new Level 4 NICU. No one took us.
• Mason ended up having several pneumonia’s and the walk in Dr. we had been seeing wrote a letter to Children’s ER and GI clinic. We had to go to the ER several times within several weeks and then one Dr. Finally said he would try to find us a Pedi.
• We went through 15 Pedi’s who wouldn’t take Mason on because his care was “too acute”. If that makes any sense.
• When Carter was born he was born with some issues and Dr. Ramesh saw him. He then asked why we had taken Mason from his care. Apparently his office screwed up by telling us and not booking any appointments for us. Mason was one of the dozen patients he was keeping. So since we still had no pedi, Mason resumed care under Dr. Ramesh.
• When Mason runs, he runs to the left and his left arm either doesn’t move or moves in huge movement. Not controlled movement. As well as he goes and ends up way left when he runs. He also favors his left leg when going up and down stairs.
• Now we have noticed that he falling down often, its like his left leg just buckles under him and down he goes. This happens more when he is tired I think? Recently we found out he doesn’t have proper reflex’s in his left knee. PT at the Surrey CDC has no interest in him.
• May 2009, Mason begins screaming fits for what seems like no reason. He screams all day until he is held. Mason wants to be held and walked around. He doesn’t want you sit.
• This behavior continues and he becomes more violent with himself and others as time passes.
• Neuro saw Mason for the first time in August 2009 and has ordered a couple blood tests for muscle disorders. He will go back to see them in March after he is two, at this time they will book a MRI.
• August to Nov, 2009 Mason had many spells of vomiting and sicknesses.
• In Oct. of 2009 GI would like Mason to be gaining a lot more weight. They decide it would be best to put him on a higher calorie formula. There “best” option they saw was Pediasure 1.5. This is not a broken down formula, after two days of intense screaming and vomiting, Mason starts to vomit blood. I stop his new formula immediately and put him back on peptamin Jr. on continuos feeds due to his stomach needing a serious break. Mason had never been so happy since getting his g-tube, he was not screaming from morning to night in pain, the vomiting has subsided from day to day to maybe once a week.
• Mason has had several (monthly) Aspiration pneumonia's since he had the G-tube placement.
• In October 2009 we ended up almost losing Mason due to being unable to pay for his medical supplies and costs. Variety-Children’s Charity finally stepped in. They gave us a year grant that covered some of Mason’s supplies. They told us that next year they did not want to cover basics. It is now next year. We are having to apply all over the place again for funding.
• Told by the speech path in Jan 2010, at CDC that they suspected he could be autistic.
• Attended “It takes two to talk”, a Hanen course at the Langley CDC. This really helped me and Mason with communication. Mason now has alot of words. But they are what they call “Rot” speech. He is unable to answer questions and he speaks in all phrases. His latest speech assessment Oct, 2010 puts him in the 3% for his age in communication, social & expression
• March 2010, Neuro saw Mason, said why doesn’t he fit in the Autism Spectrum? Also sending him for MRI. See back when all the things he asked for are done. He suggested having Mason screened for Autism.
• IDP worker started in May 2010, has completed Ages & stages & Development Assessment. Mason comes in quite delayed in several areas.
• Mason’s behaviors can be very out of control, b/c he just doesn’t know what he wants are how to calm down.
• If Mason had his way you would be 1 on 1 with him all day and you would carry him around and show him things. I could walk around the house for hours showing him the same things and he would be so happy. Now he just has all day meltdowns and is violent.
• Mason really enjoys “Higher” meaning going on the swings. I have found that this helps with his behavior, if he receives this often enough in the day. I have a travel baby swing that he sits in ever so often during the day.
• Mason is also quite affected with noises, certain tones and different volumes. Mason wears Special Ear Muffs daily for portions of the day along with sunglasses for “sunny day”. This means its bright in his eyes, even if its really cloudy, it’s just the amount of light is bothering him.
• Mason has alot of trouble with all activities of the day and is more dependent than my 1 year old. It is frustrating, emotionally and physically. Mason has no understanding of Safety, he has no problem walking away and never comes when called. Mason tries repeatedly to drink water from whatever means possible. We have to constant eyes on him for his own safety and the safety of others. Mason will try to drink water out of the toilet if left in the bathroom, alone. With his Life threatening Aspiration risk, one of us has to go in the shower with him and it is a struggle to make sure he doesn’t get water. Showers and baths have been a source of many Aspiration Pneumonia’s. They can be very stressful. Showering Mason actually takes two people because of the other children. Mason tries to turn on the BBQ and the Gas stove. Mason has electrocuted himself on a few occasions with putting objects into the outlets. One of these episodes caused him to have a second degree burn on the palm of his hand. When asked three minutes after he did this he didn’t know which hand was hurt. This is where safety is really hard for us. Mason does really well with one on one, but if someone isn’t right with him he is both dangerous and destructive.
• Mason is difficult to dress. He doesn’t like to have his diaper changed or even believe it needs to be changed. He doesn’t understand when he is poops and has never asked to be changed. The IDP worker is hopeful that around 4-5 we may be able to start with potty training. But I would think he would also have to have is loose bowels under control first. He doesn’t handle clothing changes very well and often we have to change him in his sleep. The backpack that houses Mason’s Formula and Feeding Pump is also another factor in getting Mason dressed. I believe this has hindered Mason’s ability in learning to dress.
• Mason’s quality of life is very low right now, we believe it’s in the 30% and without us it would be a lot lower. Mason is violent and destructive. Mason’s has no self soothing abilities and it can take hours to calm him down, only for him to have another melt down a few minutes later. Mason is a full time job and then some. We are Mason’s life and we are his only.
• Joshua my oldest has been Diagnosed with ADHD and Asthma this past summer. He also has scares both physically and mentally from the Abuse that Mason daily gives out. Lately Joshua has been asking to get away from Mason. “Will Nana take me today, so I can have a break from Mason?” He is almost 5 and should not be worrying about these kind of issues.
• Carter is 15 months and also has scares from Mason. Carter is now also developmentally Delayed and has some of the same issues as Mason with eating. We are waiting for a feeding study. It will be in January 2011, unless I feel that he is declining fast. I will then go and push. Carter is on the wait list for Infant Development Program.
• In terms of respite. We have been without Mason 4 nights of his 31 months of life. I have other children who are suffering due to our circumstances and I believe Mason is suffering. I am very tired and very done most days. I have begun to give myself time outs due to my anger. I have thought about just walking away many times lately, not
b/c I don’t love my children. I am just emotionally and physically drained, so is my husband.
• Within the last week I have been diagnosed with “Burt out” Depression and I have started medication.
Our life is Hell right now. We are out looking for funding to get us through the next year again. I have not even began to tell you what our life is like. I spend 2-4 days a week at Dr. appointments. We spent over $1800 on parking alone last year. Since Mason was born we have had to spend just under $60,000 thousand for his needs and a vehicle to get to appointments. Our family has no money left and Mason’s needs are so high cost.
My husband works about 30 extra hours in a two week period to help with the costs. I am unable to work due Mason’s needs. For six months when Carter was first born with Health issues we had a nanny to help, we went through 7 Nannies in this small time frame. No one has been able to handle Mason thus far. Since the government stopped helping and we can’t afford our day to day life. We never pursued trying another Nanny.
When people ask what I do, I say I have 5 full time jobs. Because I do. Mason’s care is 2 full time jobs, then I have his medical appointments, paperwork & calls. I also am constantly looking for funding. The stress financially is incredible.
It has taken me weeks to write this letter. Our family so is unhappy and so effected by the many layers of stress. And we are tired and we feel done. We want HELP. I don’t understand why we have had so many doors closed in our faces.
• Mason is on a 18 months speech waiting list
• Mason is waiting for Early Childhood Mental Health
• Mason is not receiving any services from the Surrey CDC.
• Mason will not receive any OT services from the CDC due to his need. They felt he needed so much that once a month consultation would be a waist of time. THIER TIME.
• We have been turned down by the CDC Phycologist due to “his age” whatever that means.
• The feeding team & Dietician made us sign so they could close our case. We were left with no dietician for 9 months. Mason has a G-tube. We have been left to make our own “diet” plan. Recently Children’s Hospital opened a new clinic for children who are
tube fed. We finally have a dietician and are getting instructions of how to feed our son.
• It took till Mason was over two to actually get IDP in place. They are the only ones who really “understand” Mason at this point.
As a whole our family is frustrated and needs the help of the At-Home Program. If we don’t get it I don’t know what is going to happen to our family. We want to stay together.
We have been told by many Drs. and Social work that we should Divorce so I could go on Welfare, Mason would receive Medical Benefits. We have also been told to go to the ER and tell the Drs. we cannot longer care for Mason. Which is not really true. If Mason was given the care he needed, the care the Drs. say he needs and should have. Then we are the best for Mason. We love him and want him to get well. He and we need help. We are broken no one is helping.
I hope that you really look hard at all the details you have been given on Mason. Mason is extremely complicated and we have been passed on by so many because of his complexity. We are begging for help and no one is helping. You must be on the “At Home Program”. So until Mason gets some help we will continue to fight for our son as long as we can. But we are tired and stressed. Our life has fallen apart and we need to find a way to fix it. But we need your help.
If you have any questions, please don’t hesitate to ask.
Sincerely,
Nick, Dana, Joshua, Mason & Carter Sears.
*After I read this and talked with our Advocate, I decided to take out portions of this letter. It's not the right place and the right time. All portions including Social workers were taken out as well as knowledge about our blog.*
