Our Weary World
Another trip logged in the book of life. I dashed down to Salt Lake late Monday night, through a blizzard and arrived close to midnight at Spencer's apartment. His appointment started bright and early today, in outer darkness where they send the GI outcasts such as ourselves.
I decided I would keep my mouth shut and let Spencer do all the talking and he did a great job. For one little part, he looked at me for an answer so I answered. Spencer thinks I'm being paranoid but I think the GI department has me flagged as a troublemaker of a mom. The second I started to speak, the doctor said to Spencer, "Excuse Me? Who is she and why is she talking?" Of course Spencer said, "My mom."
"Because of legal ramifications, I need you to give me permission to address her." the doctor responded.
Oh Brother! I'm so sick to death of the way GI is treating us. I'm over it. They are so rude. I don't get it. Life is absolutely hard enough without their pious attitudes.
Anyhow, long story short, the doctor admitted that he has no clue what is wrong with Spencer. I actually appreciated that he was honest and forthright. I totally respect that. He warmed up to me a bit after the first hour but on some points, he was argumentative.
At first he disagreed that Spencer has a gastric emptying issue. He showed us the actual scans and even pointed out that Spencer's stomach was completely full of contrast and very little was anywhere else. The radiologist flagged that but his argument is that his stomach wasn't horribly distended so it must be okay but then he said, 'well maybe but what does it matter, there is no treatment for it anyways.' He suggested Spencer just eat tiny meals many times a day. I told him that in fact many DC kids have gastric pacemakers or try medications and even tube feedings. He argued that the medications aren't available in this country but then 10 minutes later said they were but they can cause heart problems so treatment is not an option for Spencer so basically, we shouldn't worry about his delayed emptying. So, I don't really know if he has delayed gastric emptying or not but we've been refused formal testing.
He kept bringing up the blood tests that indicated an insulin issue and argued with us that Endocrinology was dead wrong in their diagnosis of Spencer not having a problem. Spencer spoke up and disagreed with him. They had a little friendly banter back and forth but nothing was resolved.
The doctor said that carcinoid tumors of the small bowel is still a possibility but he wants to 'wait and see' rather than do anymore testing. He is concerned that Spencer's ANA is really high so that would also support a possible cancer in the small bowel but it could also be high because he is still clearing the Hepatitis. Hepatitis could be an autoimmune issue and that would also cause the ANA to be elevated so much. Spencer's abdomen is filled with enlarged lymph nodes so that is also a worry but again, could be a result of Hepatitis rather than a cancer.
So, the plan is we will go back in 4 weeks and hopefully his liver will be healed and we can retest the ANA. He is going to have a conference with the substitute GI doc we had before him and see if she would be willing to work with him to figure this out. He gave Spencer two medications to just slow down his GI tract which I think is the very opposite of what we should be doing but nowadays, if you don't comply, doctors will drop you. Even though I didn't love this guy's bedside manner, I'm willing to stick with him. We don't really have a choice. He did seem like he was willing to learn some things...maybe. I'm just being overly hopeful.
In other shocking Spencer news...he has a staph infection on his arms, legs and chest!! He showed me these big sores all over so we checked with the doc today! This kid is picking up every rare infection known to man! I don't get it. They are also testing him for C-Diff again!
On Monday night, about a couple of hours before I got there, he lost consciousness again. He was with a friend and they were just starting a workout at the gym. Spencer told him he needed to leave and before they even got out of the building, Spencer had lost his sense of where he was and 'woke' up, reclined in the driver seat of his car. He lost his vision this time and it was 10 minutes before he could speak or form a thought.
As he was describing this event, he told me that whatever is happening is taking so much out of him that he feels like he is literally struggling to come back to life. It is so painful and uncomfortable when it first starts that he just wishes he would slip away.
I don't know what is happening to him. It is very worrisome as you can imagine. He strongly believes that if it wasn't for his pacemaker keeping his heart beating, he would have died last night. I don't know what else to do or where to go to get him help.
It's been such a disturbing day but the silver lining is that he let me bring him home for the rest of the week! I didn't need to beg and plead too much and I'm glad he will be here to get a little rest, be with the people who love him and recharge a bit. I just think being together will be good for us all.
I decided I would keep my mouth shut and let Spencer do all the talking and he did a great job. For one little part, he looked at me for an answer so I answered. Spencer thinks I'm being paranoid but I think the GI department has me flagged as a troublemaker of a mom. The second I started to speak, the doctor said to Spencer, "Excuse Me? Who is she and why is she talking?" Of course Spencer said, "My mom."
"Because of legal ramifications, I need you to give me permission to address her." the doctor responded.
Oh Brother! I'm so sick to death of the way GI is treating us. I'm over it. They are so rude. I don't get it. Life is absolutely hard enough without their pious attitudes.
Anyhow, long story short, the doctor admitted that he has no clue what is wrong with Spencer. I actually appreciated that he was honest and forthright. I totally respect that. He warmed up to me a bit after the first hour but on some points, he was argumentative.
At first he disagreed that Spencer has a gastric emptying issue. He showed us the actual scans and even pointed out that Spencer's stomach was completely full of contrast and very little was anywhere else. The radiologist flagged that but his argument is that his stomach wasn't horribly distended so it must be okay but then he said, 'well maybe but what does it matter, there is no treatment for it anyways.' He suggested Spencer just eat tiny meals many times a day. I told him that in fact many DC kids have gastric pacemakers or try medications and even tube feedings. He argued that the medications aren't available in this country but then 10 minutes later said they were but they can cause heart problems so treatment is not an option for Spencer so basically, we shouldn't worry about his delayed emptying. So, I don't really know if he has delayed gastric emptying or not but we've been refused formal testing.
He kept bringing up the blood tests that indicated an insulin issue and argued with us that Endocrinology was dead wrong in their diagnosis of Spencer not having a problem. Spencer spoke up and disagreed with him. They had a little friendly banter back and forth but nothing was resolved.
The doctor said that carcinoid tumors of the small bowel is still a possibility but he wants to 'wait and see' rather than do anymore testing. He is concerned that Spencer's ANA is really high so that would also support a possible cancer in the small bowel but it could also be high because he is still clearing the Hepatitis. Hepatitis could be an autoimmune issue and that would also cause the ANA to be elevated so much. Spencer's abdomen is filled with enlarged lymph nodes so that is also a worry but again, could be a result of Hepatitis rather than a cancer.
So, the plan is we will go back in 4 weeks and hopefully his liver will be healed and we can retest the ANA. He is going to have a conference with the substitute GI doc we had before him and see if she would be willing to work with him to figure this out. He gave Spencer two medications to just slow down his GI tract which I think is the very opposite of what we should be doing but nowadays, if you don't comply, doctors will drop you. Even though I didn't love this guy's bedside manner, I'm willing to stick with him. We don't really have a choice. He did seem like he was willing to learn some things...maybe. I'm just being overly hopeful.
In other shocking Spencer news...he has a staph infection on his arms, legs and chest!! He showed me these big sores all over so we checked with the doc today! This kid is picking up every rare infection known to man! I don't get it. They are also testing him for C-Diff again!
On Monday night, about a couple of hours before I got there, he lost consciousness again. He was with a friend and they were just starting a workout at the gym. Spencer told him he needed to leave and before they even got out of the building, Spencer had lost his sense of where he was and 'woke' up, reclined in the driver seat of his car. He lost his vision this time and it was 10 minutes before he could speak or form a thought.
As he was describing this event, he told me that whatever is happening is taking so much out of him that he feels like he is literally struggling to come back to life. It is so painful and uncomfortable when it first starts that he just wishes he would slip away.
I don't know what is happening to him. It is very worrisome as you can imagine. He strongly believes that if it wasn't for his pacemaker keeping his heart beating, he would have died last night. I don't know what else to do or where to go to get him help.
It's been such a disturbing day but the silver lining is that he let me bring him home for the rest of the week! I didn't need to beg and plead too much and I'm glad he will be here to get a little rest, be with the people who love him and recharge a bit. I just think being together will be good for us all.
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