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.