I know I do not post here that much but it is somewhere that I can post anything that I want. I am battling the ins. company for the care they have been giving my son over the last year. They have this whole complicated system in place just so they can have a legal way out of their responsibility as someone who you pay (and pay well) for a service that hopefully you may not really need. Over the years I have paid and paid and paid and have never really used up as much as I had paid them. Now I am getting it back. There is a situation that has arisen that I need them to step up. Oh no! Now I need them and they want to try to wiggle out of every last little penny that they can. I have paid for 23 years and now it is their turn and they bitch and whine about how they have to pay. The reform should be ,in all areas, that the shit just doesn't have to be this complicated. Just think if like hey we pay this much if your bill is this much. What could be any easier than that, Sure they make it sound like that when you sign up but lo-and-behold when they gotta pay hey you didn't code this right or hey you should have billed that separately or we don't think he needs that test! Who the hell are they to tell my doctor what tests he should run!I mean come on man when are we gonna say enough is enough. Sure up there on the hill the powers at be have no trouble with insurance cuz they get it all for freeeeee for the rest of there lives! What the hell is that! How come I can't get that deal. Are they that much more important than us. I don't think so, just look at how they run this country. Right into the shitter!
Well, thats my rant for now I am sure I will think of more in a few more minutes.
Later
Tuesday, November 30, 2010
Saturday, August 21, 2010
Normalcy?
I was just thinking yesterday that things are seeming a little more like we are hitting a groove. There has been a whole lot of things for us to learn and it has been very overwhelming. I think that we have done a good job with that and have absorbed the information we need to know to take care of Johnny. In the beginning of things like these it is just so daunting of a task being under that cloak of ignorance. There seems to be no way in hell that you will be able to learn all the information in such a short period of time. Or even discern which is the right path to traverse. I felt that if we did not choose the exact right way that our son could be debilitated forever. That is a horrible feeling and a way to live. I know that all parents feel that in some fashion but in things such as these I think it has a whole other meaning behind it.
Katherine has done such a great job at keeping all this together that I am amazed. I know that without her Johnny would have been in trouble. This thing is so hard to get under control that someone has to be there 24/7. She has a chart and marks down everything he does so we know why or what to expect. I think now that we are where we are with this that we can possibly get into some sort of normalcy. I guess that term can be misconstrued to you're liking but I mean just doing normal baby stuff. Like taking walks, playing in the park, maybe going to grandma's.Stuff like that has been very hard to do for us. It has been impossible really. We really can't even leave him with a sitter. There is just to much that has to be done.
So he is doing much better with his feeding tube and he is GROWING! That is huge for him. He really hasn't grown since he was born 10 months ago. He is starting to eat solid foods which he needs to do in order to make things better for controlling his NDI. Soon as he is on mostly solid foods he will be able to control his water much better. That is a problem a lot of these kids have. They do not like to eat they just want to drink water. He does not seem to have that issue.
Really that is all that has been going on. Things are getting better. I know things may get worse or other stuff may happen but for right now we are happy with his forward progress. If there is one thing I have learned from all this is that you have to get involved and be the general in the campaign.
Katherine has done such a great job at keeping all this together that I am amazed. I know that without her Johnny would have been in trouble. This thing is so hard to get under control that someone has to be there 24/7. She has a chart and marks down everything he does so we know why or what to expect. I think now that we are where we are with this that we can possibly get into some sort of normalcy. I guess that term can be misconstrued to you're liking but I mean just doing normal baby stuff. Like taking walks, playing in the park, maybe going to grandma's.Stuff like that has been very hard to do for us. It has been impossible really. We really can't even leave him with a sitter. There is just to much that has to be done.
So he is doing much better with his feeding tube and he is GROWING! That is huge for him. He really hasn't grown since he was born 10 months ago. He is starting to eat solid foods which he needs to do in order to make things better for controlling his NDI. Soon as he is on mostly solid foods he will be able to control his water much better. That is a problem a lot of these kids have. They do not like to eat they just want to drink water. He does not seem to have that issue.
Really that is all that has been going on. Things are getting better. I know things may get worse or other stuff may happen but for right now we are happy with his forward progress. If there is one thing I have learned from all this is that you have to get involved and be the general in the campaign.
Saturday, July 24, 2010
Another Hospital stay
We have another stay in the hospital coming up next week. They are talking about putting a feeding tube in his stomach for an extended period. We have the tube in his nose now and it is working really well except that no one gets any sleep. He has gained almost a pound this last week which is unbelievable for him which had taken him three months before. So they want to surgically implant a tube now that we have found out it will work for him. This requires a four day stay in the hospital and that will be difficult especially since we haven't gotten much sleep these last few weeks.
It is a really good thing that is happening for him finally now that the hospital admits what kind of DI he has. We are finally seeing some progress in his treatment. He is on 5 meds and may go on one more but that one more would cancel out one and they are talking of taking 2 away after the tube has been working for awhile so we could be down to three in a matter of a month. There are minimal side effects as well so that is also good news. All in all its has been a great week for little Johnny and we are very happy to be moving forward. Hopefully in the next few weeks we can see some real improvement!
I think that we will see some major steps forward. Today we gave him a little portion of some baby food and he wanted and loved it.He didn't throw it up and that is a very important step. If he is going to make any strides to better health that is what has to happen for him. He has to get on solid foods before he can take the meds like he needs to. Right now being so small I think he can't really take the dose that he needs to take. The meds help some but I think they could do better for him if he was a lot bigger. I could be wrong, this may be the best they can do but for now it has to be enough. I am very happy with the progress and when he gets enough sleep he is a happy little guy.
We are having a little trouble adjusting to everything and worry about the future for him but that is a parents job really anyway isn't it? I mean we all worry about the future for our children and want the best for them. We just have a little something else to worry about. If it wasn't this we would find something else.
Well, I know I haven't posted much but I am doing the best I can. Like I said we do not get much sleep. Like now it's 3 in the morning and I am waiting for the food to stop pumping so I can clean it, change him, then go back to bed. This is the only time I have. So maybe it's a good thing to be up. I just hope I can inform someone else who's child has this and are looking for answers. It was hard for us to find some and get the doctors on board. So contact me if you want you want to talk or ask some of our experience with this thing. We are not doctors but just having gone through the same thing as someone else and being able to ask them questions about their experience was probably the most helpful thing for us and our son. This is a pretty rare thing so there is not that much info out there for us and for that matter not even the doctors have much to go on.
So have a great weekend and be Good !!!!
It is a really good thing that is happening for him finally now that the hospital admits what kind of DI he has. We are finally seeing some progress in his treatment. He is on 5 meds and may go on one more but that one more would cancel out one and they are talking of taking 2 away after the tube has been working for awhile so we could be down to three in a matter of a month. There are minimal side effects as well so that is also good news. All in all its has been a great week for little Johnny and we are very happy to be moving forward. Hopefully in the next few weeks we can see some real improvement!
I think that we will see some major steps forward. Today we gave him a little portion of some baby food and he wanted and loved it.He didn't throw it up and that is a very important step. If he is going to make any strides to better health that is what has to happen for him. He has to get on solid foods before he can take the meds like he needs to. Right now being so small I think he can't really take the dose that he needs to take. The meds help some but I think they could do better for him if he was a lot bigger. I could be wrong, this may be the best they can do but for now it has to be enough. I am very happy with the progress and when he gets enough sleep he is a happy little guy.
We are having a little trouble adjusting to everything and worry about the future for him but that is a parents job really anyway isn't it? I mean we all worry about the future for our children and want the best for them. We just have a little something else to worry about. If it wasn't this we would find something else.
Well, I know I haven't posted much but I am doing the best I can. Like I said we do not get much sleep. Like now it's 3 in the morning and I am waiting for the food to stop pumping so I can clean it, change him, then go back to bed. This is the only time I have. So maybe it's a good thing to be up. I just hope I can inform someone else who's child has this and are looking for answers. It was hard for us to find some and get the doctors on board. So contact me if you want you want to talk or ask some of our experience with this thing. We are not doctors but just having gone through the same thing as someone else and being able to ask them questions about their experience was probably the most helpful thing for us and our son. This is a pretty rare thing so there is not that much info out there for us and for that matter not even the doctors have much to go on.
So have a great weekend and be Good !!!!
Sunday, July 11, 2010
Hospital Stay
Hey , Well it was a very long weekend. We just got home from the hospital a couple hours ago and we have a new set of rules to live by with Johnny. We have new meds and a nose tube (NG) for feeding. He has trouble with feeds and growing as well as throwing up. Plus the diabetes insipidus. I think that this time (finally) we have addressed all his issues and seemingly are on the right track to resolving them.
If you have read the last posts or know me at all you may have noticed that I have not been happy with CMH (under-statement). Well, this time I think we actually made some progress! In the last three months we have been back there a couple times. Each time it felt as if we had gotten no where. Sometimes it felt as if we had taken steps backward. I have been very mad about this and think that if they would have just listened to a few things we would have trudged this way a lot sooner. We have a very good team now and they actually seem to know a little about this disease. Thank God!
Although there was a few things that I thought could have gone different was the main test that was taken to determine which DI he has. He had to undergo water depravation which is hard and dangerous for him. Well, initially the doctors said that it would be an hour long test. Not so bad we thought. Well, they kept calling the nurse saying lets go another half an hour. At the three hour point I stepped in and told them that was enough. The nurse said no we can't do that the doctor said they want to keep going. I said I don't care the test is over and ultimately I say what goes. She was like but the doctor and I said so what the test is over! At this point you get the look. The look that says you are an asshole and shouldn't be allowed to raise this child. Tough shit this was the doctors trying to prove that they where not wrong about the initial diagnosis and probably making sure they didn't screw up again. The test was fairly straight forward and after the first half hour it was apparent that he had NDI not CDI like they had thought. So they usually go that extra half hour only but I guess they where trying to not look like such idiots and on an outside chance maybe still save some face. Not gonna happen for them.
What really makes all of this just piss me off is I was reading the files that we have gotten from his previous stays and I come to find out that three days into our first stay. Our first stay three months ago!!!! I see this note that they where talking about doing this test and the vasopressin level test. I think the only two tests that really tell them what type or if someone has DI. When they suspect DI they should automatically run these tests. Well, they didn't and put us through hell for three months on the MRI findings. That test is good but all types of DI could have the same results in a MRI. Something they told us wasn't possible. That only CDI would show up like that. So we could have been at this juncture three months ago and Johnny could have been growing that whole time. He would have not lost three important months of development. That is just unacceptable to me.I know that this is a rare thing but at the same time if you really aren't sure or do not know these are not areas that you should just wing it. Go ask someone that knows. We are not doctors and I think the only reason we are where we are is because we went and found that guy and forced them to listen to him. Our pediatrician forced them to do these tests and to not ignore the obvious. What a waste of time and money.
I do not even want to get started on the insurance companies. There is the reform to the health industry that we need. So we got this bill from CMH and it was quite a lot. On the bill you see what the total is what the insurance paid and then what the insurance company gets credited for the hospital and us being members of their network. Well, they take off half for that. I am not complaining but man half! If I didn't have insurance then I would have to pay the whole bill. I am having trouble keeping up just paying my portion after insurance. What would someone do without?
So here is how I see it. The hospital cuts out half the insurance pays 40% and I pay10%. This is where the trouble lies. The insurance companies have inflated the cost by 100% and charge us according to that when in reality they are only paying on half of that. What a scam that should be illegal.
Anyway Johnny is home and doing well. Wish us the best and have a great night.
If you have read the last posts or know me at all you may have noticed that I have not been happy with CMH (under-statement). Well, this time I think we actually made some progress! In the last three months we have been back there a couple times. Each time it felt as if we had gotten no where. Sometimes it felt as if we had taken steps backward. I have been very mad about this and think that if they would have just listened to a few things we would have trudged this way a lot sooner. We have a very good team now and they actually seem to know a little about this disease. Thank God!
Although there was a few things that I thought could have gone different was the main test that was taken to determine which DI he has. He had to undergo water depravation which is hard and dangerous for him. Well, initially the doctors said that it would be an hour long test. Not so bad we thought. Well, they kept calling the nurse saying lets go another half an hour. At the three hour point I stepped in and told them that was enough. The nurse said no we can't do that the doctor said they want to keep going. I said I don't care the test is over and ultimately I say what goes. She was like but the doctor and I said so what the test is over! At this point you get the look. The look that says you are an asshole and shouldn't be allowed to raise this child. Tough shit this was the doctors trying to prove that they where not wrong about the initial diagnosis and probably making sure they didn't screw up again. The test was fairly straight forward and after the first half hour it was apparent that he had NDI not CDI like they had thought. So they usually go that extra half hour only but I guess they where trying to not look like such idiots and on an outside chance maybe still save some face. Not gonna happen for them.
What really makes all of this just piss me off is I was reading the files that we have gotten from his previous stays and I come to find out that three days into our first stay. Our first stay three months ago!!!! I see this note that they where talking about doing this test and the vasopressin level test. I think the only two tests that really tell them what type or if someone has DI. When they suspect DI they should automatically run these tests. Well, they didn't and put us through hell for three months on the MRI findings. That test is good but all types of DI could have the same results in a MRI. Something they told us wasn't possible. That only CDI would show up like that. So we could have been at this juncture three months ago and Johnny could have been growing that whole time. He would have not lost three important months of development. That is just unacceptable to me.I know that this is a rare thing but at the same time if you really aren't sure or do not know these are not areas that you should just wing it. Go ask someone that knows. We are not doctors and I think the only reason we are where we are is because we went and found that guy and forced them to listen to him. Our pediatrician forced them to do these tests and to not ignore the obvious. What a waste of time and money.
I do not even want to get started on the insurance companies. There is the reform to the health industry that we need. So we got this bill from CMH and it was quite a lot. On the bill you see what the total is what the insurance paid and then what the insurance company gets credited for the hospital and us being members of their network. Well, they take off half for that. I am not complaining but man half! If I didn't have insurance then I would have to pay the whole bill. I am having trouble keeping up just paying my portion after insurance. What would someone do without?
So here is how I see it. The hospital cuts out half the insurance pays 40% and I pay10%. This is where the trouble lies. The insurance companies have inflated the cost by 100% and charge us according to that when in reality they are only paying on half of that. What a scam that should be illegal.
Anyway Johnny is home and doing well. Wish us the best and have a great night.
Thursday, July 8, 2010
Update
Well yesterday I was on a rant. I think deservedly so. I have just had my fill of these doctors going back and forth and being so wishy-washy.
Today and last night it has been so hot and humid here. Johnny can't take these conditions. He has a very hard time and we are giving him more water so he doesn't dehydrate. Well he doesn't throw up as much we have found out, but there is a problem. He realizes how more water makes him feel. A lot better I would surmise. So he doesn't want to take his formula any more. This I know is what the doctors where worried about. Well here we are and now what do we do. You could say it is our fault for giving him more water but if we didn't he would be in the hospital dehydrated. Now though I imagine we will go because he will not have enough caloric intake. Really, we are at the same point we were just without a dehydrated baby. He threw up all his caloric intake before because he was dehydrated and couldn't keep it down. Maybe now since he is keeping down what he takes in we are in the same position.
So we have to take him in to get the test redone so they can figure out which DI he has. Then I would imagine, while we are there, they will want to keep him and do there trial DDAVP medication for CDI. I do not think I will let them. I am going to push to treat him as a NDI patient. If we treat him that way till we get the test results it will make no difference. He will be in the same position he is now. If we treat him with the DDAVP while we wait then he could be in a compromising situation. He could get dehydrated without his diaril.
I think that is the best way and I can't believe that the doctors would have a problem with that. It seems like the safe way to do things to me. Since the last test came back with a number that suggests the test may have been manipulated by the meds he was taking at that time.
So wish us luck for this scenario to go as planned and maybe in a week or so we can have some definite answers and a plan of attack. Later and Be good!
Today and last night it has been so hot and humid here. Johnny can't take these conditions. He has a very hard time and we are giving him more water so he doesn't dehydrate. Well he doesn't throw up as much we have found out, but there is a problem. He realizes how more water makes him feel. A lot better I would surmise. So he doesn't want to take his formula any more. This I know is what the doctors where worried about. Well here we are and now what do we do. You could say it is our fault for giving him more water but if we didn't he would be in the hospital dehydrated. Now though I imagine we will go because he will not have enough caloric intake. Really, we are at the same point we were just without a dehydrated baby. He threw up all his caloric intake before because he was dehydrated and couldn't keep it down. Maybe now since he is keeping down what he takes in we are in the same position.
So we have to take him in to get the test redone so they can figure out which DI he has. Then I would imagine, while we are there, they will want to keep him and do there trial DDAVP medication for CDI. I do not think I will let them. I am going to push to treat him as a NDI patient. If we treat him that way till we get the test results it will make no difference. He will be in the same position he is now. If we treat him with the DDAVP while we wait then he could be in a compromising situation. He could get dehydrated without his diaril.
I think that is the best way and I can't believe that the doctors would have a problem with that. It seems like the safe way to do things to me. Since the last test came back with a number that suggests the test may have been manipulated by the meds he was taking at that time.
So wish us luck for this scenario to go as planned and maybe in a week or so we can have some definite answers and a plan of attack. Later and Be good!
Wednesday, July 7, 2010
Test results
Our sons test result came back and it had the highest levels of vasopressin the doc had ever seen. They redid the sample just to check and found out that it was right. I had mentioned that we had just stopped giving him the synthetic version the day before. They said it wouldn't matter. Well shit my drawers guess what this dumb ass Ironhead was right! Now they say they still think it is CDI. What idiots! Anybody can see that it is not! Why can't they? Cuz they have too big of egos and can't admit they are wrong! Wrong wrong wrong!
So I am telling them they need to do the test over. If you get on the NDI site you can see by the posts of other parents that he has all the same symptoms. I wish they would get there head out of there ass and just look at Facebook. I mean how can you refute that kind of evidence. I know that by reading the doctors reports that it is very apparent he doesn't have CDI. I think my wife,wait, I know my wife knows way more about this thing than they do. They should just listen once in awhile and stop being the pompous assholes that they are. The good doc in this whole bunch is Dr.Blade. If not for her I would think they were all a bunch of quacks. Well there is the retired dr who has taken an interest as well but it seems that they will not take his advice. The man has 30 plus years in dealing with just this disease and they will not listen to him! I wish there was some way around this system but I think we just have to muddle our way through for now until we can get a safe departure point. Then make our move to someone who knows or is at least willing to learn. Like Dr. Blade. She has our back in all this and we are very lucky for that. If we didn't have her we would be in a world of hurt.
So anyway our doctors are assholes but we tell them what to do in the end. Don't we? We will retake that test so there is no in fighting or guessing and then we can proceed. I can't believe that out of all of them that not one would even mention doing that. Like say, Hey duh guys that test was unusually high. Never seen those kind of levels ever-duhh- what do think we should do? Duh hey I know lets just try a treatment and see if it works duh. Tests are over rated any way.
Once we have the results then we will all know what to do and who is right. Hell I may be the one who is wrong and is the ass. At least I am willing to try to find out though. Night!
So I am telling them they need to do the test over. If you get on the NDI site you can see by the posts of other parents that he has all the same symptoms. I wish they would get there head out of there ass and just look at Facebook. I mean how can you refute that kind of evidence. I know that by reading the doctors reports that it is very apparent he doesn't have CDI. I think my wife,wait, I know my wife knows way more about this thing than they do. They should just listen once in awhile and stop being the pompous assholes that they are. The good doc in this whole bunch is Dr.Blade. If not for her I would think they were all a bunch of quacks. Well there is the retired dr who has taken an interest as well but it seems that they will not take his advice. The man has 30 plus years in dealing with just this disease and they will not listen to him! I wish there was some way around this system but I think we just have to muddle our way through for now until we can get a safe departure point. Then make our move to someone who knows or is at least willing to learn. Like Dr. Blade. She has our back in all this and we are very lucky for that. If we didn't have her we would be in a world of hurt.
So anyway our doctors are assholes but we tell them what to do in the end. Don't we? We will retake that test so there is no in fighting or guessing and then we can proceed. I can't believe that out of all of them that not one would even mention doing that. Like say, Hey duh guys that test was unusually high. Never seen those kind of levels ever-duhh- what do think we should do? Duh hey I know lets just try a treatment and see if it works duh. Tests are over rated any way.
Once we have the results then we will all know what to do and who is right. Hell I may be the one who is wrong and is the ass. At least I am willing to try to find out though. Night!
Monday, July 5, 2010
NDI
We just found out yesterday that our son has NDI. It was up in the air for awhile. First they didn't know,then they thought CDI, but now we are pretty sure it is NDI. Still it is diabetes insipidus but there are different ways to treat.
The good thing is that now we know which kind he has. The bad is that I think it is harder to control. This kind of DI he cannot take the hormone because his kidney will not accept it. So you can only try your best to manage it and there is no real good way. What they are doing now really isn't working that well. He still isn't gaining weight and throwing up all the time and we are worried.
It is stressful beyond belief. I have never been through something so hard. I have had some hard times in my life and that has not prepared me for this. I think that with the way this has been handled it has had a huge impact on my well being. I mean I know it is rare thing but there are people out there that this hospital could be using and they are not. Hey just admit that you don't know and find someone who does. It seems that easy to this dumb construction worker. But I guess it isn't. There are things at play here that I have no idea about. All I want is just to have our son moving forward.
We have the best pediatrician in the world I think. This woman called us on the fourth of July to tell us the test results. It was a Sunday and a holiday! What a saint! She is the main reason that we are where we are now. We would probably still be thinking he had CDI if it wasn't for her persistence.
So this week we will get with the docs and find out what they wanna do! Wish us luck and pray for us!
The good thing is that now we know which kind he has. The bad is that I think it is harder to control. This kind of DI he cannot take the hormone because his kidney will not accept it. So you can only try your best to manage it and there is no real good way. What they are doing now really isn't working that well. He still isn't gaining weight and throwing up all the time and we are worried.
It is stressful beyond belief. I have never been through something so hard. I have had some hard times in my life and that has not prepared me for this. I think that with the way this has been handled it has had a huge impact on my well being. I mean I know it is rare thing but there are people out there that this hospital could be using and they are not. Hey just admit that you don't know and find someone who does. It seems that easy to this dumb construction worker. But I guess it isn't. There are things at play here that I have no idea about. All I want is just to have our son moving forward.
We have the best pediatrician in the world I think. This woman called us on the fourth of July to tell us the test results. It was a Sunday and a holiday! What a saint! She is the main reason that we are where we are now. We would probably still be thinking he had CDI if it wasn't for her persistence.
So this week we will get with the docs and find out what they wanna do! Wish us luck and pray for us!
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