Where we stand
Our GI update goes something like this...
I'm going to be one busy Mama. The end.
Just kidding. This week just Shelbie and Spencer saw the GI doc, next week, Sam will be on the hot seat. I was fully expecting to breeze through Shelbie's appointment, she definitely is not without problems but I have always seen Spencer as much more puzzling and sicker. He has lost roughly 15 pounds over the past few months. It's the story of his life, he's never really thrived...but he looks good!
It kind of felt like opposite day. It felt like Shelbie had much more serious and pressing issues from Spencer which I am still kind of processing.
Spencer can't digest anything and he dumps food so quickly and he's sick all the time. The doctor feels like all of Spencer's GI issues stem from his poor functioning autonomic nervous system that is completely dis-regulated and getting worse, and from a disease called Mast Cell Activation Syndrome. This has to do with a dysfunction in the immune system. He fits that clinical picture to some degree but there are still pieces missing and delayed gastric emptying is still something they are trying to determine. So, he will have some scopes coming up and they drew 16 large tubes of blood.
Shelbie is a little different but the same too. She is having similar symptoms that look like Mast Cell Activation Syndrome and she also has a problem with her autonomic nervous system in the form of Dsyautonomia. She has neuropathy in her legs because of it, meaning, she has no feeling in the lower parts of her legs. The doctor is concerned that it is affecting her entire GI tract and it is no longer contracting and holding the pressure needed to move food and nutrients through her system. I think this is also a manifestation of Mitochondrial disease but that is a touchy subject within the realm of medicine although our GI doc believes that is a possibility she hasn't ruled out.
Sadly, upon examination, she found a mass in Shelbie's abdomen which is never a good feeling, especially since the doctor was hoping to blame it on scar tissue from her weekly transfusions. This mass is very deep, well below her sub-q tissue. That will require imaging and studies and getting that scheduled will take time to move through insurance. Shelbie has 3 or 4 procedures scheduled between now and Christmas...I lost count. A couple of those will be biopsies.
Those are the highlights...
I feel so blessed that after two years of being locked out of the GI department at the University of Utah Medical Center, we were able to sneak in, without being noticed by the big, bad wolf who calls himself the Department Manager and his little minions who do the scheduling. I didn't think we would see this day...ever! As we left, our appointments for the day, the doctor commented on how complex and in depth the kids health problems are and there is a going to be a lot of catching up to do. I apologized and said, "When you live with ongoing issues for two years without a doctor who is willing to see you, things get out of control."
She paused and said, "What do you mean?" I told her how I have filed two complaints with the hospital administrators over the GI department. After our last doctor fell unexpectedly ill two years ago, the department refused to assign us another doctor. Their best offer was a Fellow which I declined, so we went without. A Fellow is just passing through and without a solid foundation of complex care issues. It would have been a waste of resources. The only way we got to this doctor was because I had a come apart with our Neurologist and she pulled some strings with this doctor directly and we bypassed the front end.
Anyways, long story short. I was redeemed this week. I have felt like I was going crazy because what kind of hospital refuses care to a person or family with serious, life threatening illness? The U of U GI department. I didn't think it was possible but it happened to us. I have faced so much judgement and disbelief from people around me because they believed I was making this up. One person even said, "Well, you overwhelm people. There's no way they would treat you like this unless you did something to annoy them." I live with those words day in and day out. I live with the constant questioning and disbelief from those around me because if they are so sick, why aren't they taking care of you?
Our doctor was very clear to let me know that this is the way of medicine and I'm not crazy or making stuff up or overbearing. Medicine has become an Industry, not a place of refuge for help. Large institutions, even teaching hospitals are about making the almighty dollar and they lose time on complex patients so they make it extremely difficult for families like us to receive treatment. They want the cases that are cut and dried. The things they do each and every day. They don't want their doctors to spend anymore than 15 minutes on a patient or case. I have wondered if this is the driving force behind our corrupt Child Protective Services and their medical kidnappings. The world of medicine and insurance is spiraling out of control and see firsthand how this is affecting our family. I remembered back to last year when our Neurologist placed orders for a brain PET scan on Shelbie and her request was denied by the head of the Imaging Department...a man who has never met us! He has no clue the extent of her neurological and brain issues yet, he gets the final say...some administrator on his high horse.
I've never wanted to sue a person or entity as much as I want to sue University of Utah.
Well, off my soapbox now to get some real work done because I have a lot of medical crap and expenses to wade through and weeks of travel.
I'm going to be one busy Mama. The end.
Just kidding. This week just Shelbie and Spencer saw the GI doc, next week, Sam will be on the hot seat. I was fully expecting to breeze through Shelbie's appointment, she definitely is not without problems but I have always seen Spencer as much more puzzling and sicker. He has lost roughly 15 pounds over the past few months. It's the story of his life, he's never really thrived...but he looks good!
It kind of felt like opposite day. It felt like Shelbie had much more serious and pressing issues from Spencer which I am still kind of processing.
Spencer can't digest anything and he dumps food so quickly and he's sick all the time. The doctor feels like all of Spencer's GI issues stem from his poor functioning autonomic nervous system that is completely dis-regulated and getting worse, and from a disease called Mast Cell Activation Syndrome. This has to do with a dysfunction in the immune system. He fits that clinical picture to some degree but there are still pieces missing and delayed gastric emptying is still something they are trying to determine. So, he will have some scopes coming up and they drew 16 large tubes of blood.
Shelbie is a little different but the same too. She is having similar symptoms that look like Mast Cell Activation Syndrome and she also has a problem with her autonomic nervous system in the form of Dsyautonomia. She has neuropathy in her legs because of it, meaning, she has no feeling in the lower parts of her legs. The doctor is concerned that it is affecting her entire GI tract and it is no longer contracting and holding the pressure needed to move food and nutrients through her system. I think this is also a manifestation of Mitochondrial disease but that is a touchy subject within the realm of medicine although our GI doc believes that is a possibility she hasn't ruled out.
Sadly, upon examination, she found a mass in Shelbie's abdomen which is never a good feeling, especially since the doctor was hoping to blame it on scar tissue from her weekly transfusions. This mass is very deep, well below her sub-q tissue. That will require imaging and studies and getting that scheduled will take time to move through insurance. Shelbie has 3 or 4 procedures scheduled between now and Christmas...I lost count. A couple of those will be biopsies.
Those are the highlights...
I feel so blessed that after two years of being locked out of the GI department at the University of Utah Medical Center, we were able to sneak in, without being noticed by the big, bad wolf who calls himself the Department Manager and his little minions who do the scheduling. I didn't think we would see this day...ever! As we left, our appointments for the day, the doctor commented on how complex and in depth the kids health problems are and there is a going to be a lot of catching up to do. I apologized and said, "When you live with ongoing issues for two years without a doctor who is willing to see you, things get out of control."
She paused and said, "What do you mean?" I told her how I have filed two complaints with the hospital administrators over the GI department. After our last doctor fell unexpectedly ill two years ago, the department refused to assign us another doctor. Their best offer was a Fellow which I declined, so we went without. A Fellow is just passing through and without a solid foundation of complex care issues. It would have been a waste of resources. The only way we got to this doctor was because I had a come apart with our Neurologist and she pulled some strings with this doctor directly and we bypassed the front end.
Anyways, long story short. I was redeemed this week. I have felt like I was going crazy because what kind of hospital refuses care to a person or family with serious, life threatening illness? The U of U GI department. I didn't think it was possible but it happened to us. I have faced so much judgement and disbelief from people around me because they believed I was making this up. One person even said, "Well, you overwhelm people. There's no way they would treat you like this unless you did something to annoy them." I live with those words day in and day out. I live with the constant questioning and disbelief from those around me because if they are so sick, why aren't they taking care of you?
Our doctor was very clear to let me know that this is the way of medicine and I'm not crazy or making stuff up or overbearing. Medicine has become an Industry, not a place of refuge for help. Large institutions, even teaching hospitals are about making the almighty dollar and they lose time on complex patients so they make it extremely difficult for families like us to receive treatment. They want the cases that are cut and dried. The things they do each and every day. They don't want their doctors to spend anymore than 15 minutes on a patient or case. I have wondered if this is the driving force behind our corrupt Child Protective Services and their medical kidnappings. The world of medicine and insurance is spiraling out of control and see firsthand how this is affecting our family. I remembered back to last year when our Neurologist placed orders for a brain PET scan on Shelbie and her request was denied by the head of the Imaging Department...a man who has never met us! He has no clue the extent of her neurological and brain issues yet, he gets the final say...some administrator on his high horse.
I've never wanted to sue a person or entity as much as I want to sue University of Utah.
Well, off my soapbox now to get some real work done because I have a lot of medical crap and expenses to wade through and weeks of travel.
Comments
Post a Comment