To anyone willing to help or at least listen,
I have had many struggles in the past year which all stem from having a very ill child. The reason that I am contacting you today is because I feel as if I have no where else to turn.
My daughters name is Fiona Magee. Since my wife was twenty weeks along in pregnancy we have known she was very ill. She was born with a disorder called maconium paratenitous (basically her intestines burst in utero sometime around twenty weeks). After her four and a half week premature birth she was immediately taken from us at Swedish hospital and put into emergency surgery at Presbyterian ****. Luke’s Hospital for surgery. This went wonderfully. She spent the first two and a half months of her life in the NICU at PSL for recovery purposes and to have many tests to see why she is so ill. With everything coming back negative she was finally released into our care.
Over the next few months we noticed her health was deteriorating. With no insurance, because of another really long story, we took her to Denver Health Emergency room one evening in April because she started to look with lack of a better word scary, Denver health referred us to Children’s hospital’s GI department and informed us that Fiona had something wrong with her liver. After countless tests we came to find that Fiona had a very rare liver disease called Alagiale’s Syndrome. So we began treatment.
During one of our hospital stays a very esteemed Dr. decided to give Fiona a Cystic Fibrosis sweat test without our consent or even knowledge. Very upset by this because we had already had this test performed in the past and it being such an emotional test for the parents and having adverse side effects. My wife and I decided to leave Children’s hospital and try to go back to PSL, only to find that the only team of Dr.’s in more than a four state region qualified to handle a person with Fiona’s condition are located at Children’s. (I include this part of the story b/c I want you to understand that we are more or less stuck with using children’s hospital unless we want to move to New York or Pennsylvania.) So we reluctantly go back to children’s hospital.
Now after a few weeks, months of treatment a decision was made that Fiona would need nutrition intravenously. So at that time we had a “pic” line (main artery IV, more permanent than the one you or I would get at the ER) put in. Fiona being a normal toddler ripped it out of course. So we “upgraded” to a Broviac IV (direct main line IV which is stitched into her chest and runs almost directly into her heart). Now, we have been maintaining this IV for several months with lots of appointments, blood draws in-home nurses coming to our house, basically allot of work and a whole lot of stress. After several months of not understanding why our daughter is not gaining weight we (us the parents and the team of Dr.’s with whom we are reluctantly working with) come to find that there was a mistake made in the calculations of Fiona’s TPN (the solution which is ran through the IV for Fiona’s nutrition). The Dr.’s blame the in-home health pharmacy and the pharmacy blames the Dr.’s. But the simple fact is that the formula which was checked several times a week by both the dr.’s and the pharmacy had ten times the amount of copper than Fiona’s little body was supposed to be getting. The Dr.’s fired the pharmacy on our behalf and without our consent, not that we wouldn’t have.
So because copper in high doses causes liver damage and Fiona already has a liver disease Children’s decides to push Fiona into liver transplant. We are now finishing with the long grueling process of listing Fiona. But during one of the visits for some test Fiona had to be sedated, while coming out of the sedation the nurse who was supposed to be caring for Fiona decided to ignore us and talk on her cell phone with her boyfriend in the hallway. Now I can put up with this as my wife and I are very comfortable taking care of our daughter in almost any condition at this point. But what upset me was she reported back to the Dr.’s that Fiona was having a hard time recovering, and yes she was a little slower than usual but the nurse was basing this on a reading from a machine which was working improperly at the time. The nurse to busy on the phone to see what was happening advised the Dr.’s to hold us overnight. Now with as much time as we spend in the hospital my wife and I were very upset and argued with the medical staff until the Dr. came in the room looked over poor exhausted Fiona and told is we could go home. But only after he lectured us for an hour about how we should do what ever they say or they won’t give our daughter a liver… What how appalling! Through the next few weeks we deal with all kinds of demands that the Dr.’s make in order for Fiona to have a new liver. They demand that my wife have a mental evaluation, as they don’t want to give a liver to a child who doesn’t have parents of sound mind? OF COURSE WE ARE STRESSED!!!!
Now my wife goes to the hospital again for a visit (the best part is the visit was to give my daughter an MRI which for a child that young requires sudation, and Fiona at the time had RSV which is a repertory infection so severe that you are not allowed to give sudation and the Dr.’s didn’t catch that until it was almost to late; sometimes I wonder if they are just trying to kill poor Fiona) keep in mind we are there at least once a week, we are upset about the mistakes the hospital has made in the past and we are at our wits end with stress over our now basically dying child. And in walks the social worker from the Hospital who tells my wife that she is going to call social services on us… My wife of course asks why and the Social worker responds: “Because you won’t get on wic and you don’t have food stamps and you missed your mental health appointment.” What is interesting about this is we have told the hospital that we don’t want wic because we have to much going on and the wic office in Jefferson County was very rude to my wife. We don’t qualify for food stamps as I make to much money, and we missed the mental health appointment which they are forcing my wife to attend because we were at the hospital and the social worker made the appt. for us without our knowledge. So we go on with our lives. Now today at nine AM a family services social worker shows up at my house and wakes up my wife after she’d been up until three in the morning with Fiona. When my wife asks why they are there they stated for the same reasons listed above and because children’s is now stating that during the confrontation we had with the nurse who wasn’t doing her job I punched a wall. Being the type of person I am I would never hit a wall. So the hospital not only is treating us terribly but making up flat out lies about us….
I write this to you in the hope that you can offer some type of help. I have no where else to turn. I know my family could use some emotional support. I also think my family is need of an attorney not only for the slander and defamation of character but I think we should file a lawsuit against the hospital for poisoning my daughter with copper. I have written letters to many attorneys in the area, I’ve called and left messages with secretaries and all to no avail.
I thank you for the time you take to read this and appreciate any help you can offer.
Since writing this post magoo.300 may have helped people, but has not within the last 4 days. magoo.300 is a verified member, has been around for 5 years, 10 months and has 1 posts and 4 replies to their name.
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