An Explanation

OK, so I guess my previous post needs a little bit of explanation. It was really the reaction to a lot of little things that have happened in the last couple of days that all came to a head this morning when I read an email that was sent to me. It was just the last straw that pushed me over the edge...so to speak.

I spent a good part of the day yesterday in Phoenix working on getting all of Bryce's medical records. These are records that I requested over a month ago and still did not have. So I had John re fax the requests to both PCH and CRS last Tuesday and on them I wrote that I would be in on Friday morning to pick them up. On Thursday I received a call from PCH telling me that Bryce's file was 297 pages long and that it would be $209 to get them! Seriously?!! I have gotten records there before for other doctors and I haven't had to pay a cent. So I asked about that and he said that it is a new policy they have, that they are charging for the copies and the labor to make them. He actually asked me if I really needed all of them and what I needed them for. Well, yes I need all of them so that I can send them to doctor's who hopefully will know more about Bryce's condition then the doctors here do! However, paying $209 for my son's records is ridiculous! He told me he would see what he could do and call me back. Well, I never heard back from him, so after Bryce's appointment with Dr. Notrica, I headed over to the hospital to see what I could do. I had the two little ones with me and since it is still flu season, I was not allowed to go into the hospital. I told them that I needed the records today and I would wait while someone brought them up to me. Luckily the gentleman that I spoke to on the phone brought them right up. He handed me a large envelope full of records and said that he had told "them" (I guess the people who are doing the charging) that I really needed the records and was not able to pay. OK, that works for me. He said that they had made an exception for this one time for me and that they would just charge me for the time it took to make the copies, which was about 2 hours. They charged $40. OK, that I can deal with. So I took the records and now have a full copy and hopefully will not have to deal with that hospital for a long time! I'm good with that!

So then we headed over to CRS to get his records from there. I went in and explained who I was and why I was there and the lady said, "oh, that would be good if I could give them to you, but that isn't how it works here." She then explained that it takes about 3-4 weeks from the time they get the request until the time they can get them to us. She explained a whole process that they go through and how the records have to be copied at the main hospital and all that crap. Anyway, by then I was like, whatever, I have most of them already so I will just wait for the rest. I did have her check to make sure the fax had come through and I explained why it was so urgent that I get his records ASAP. She was very nice and said that she would see what she could do to speed up the process. We'll see!

I am also frustrated with the run-around we are getting from the neurology department at CRS. Bryce has been having more "non-breathing" episodes and as of this week, he has become unable to suck so he cannot drink out of a sippy cup any longer. He is also having a terrible time with choking when he does eat something, which is also very bothersome. There are also some questions that I have regarding the medication he is currently taking for his stiff muscle tone. These are all related to his disorder and since we haven't seen the neurologist since October, I thought I should call and talk to his doctor about it. I also want to ask him about some other possible reasons for what is happening to Bryce that others have told me about (thanks Becca!) Well, I only got to the nurse and after explaining the different reasons why I would like to talk with the doctor she made this comment, "well, if he stops breathing, you need to take him to the hospital." No? Really? Is that what I should do?!! Seriously, I'm not stupid. I know that. These episodes are only seconds long and all I have to do is remind him to breathe and his body kicks in, it is part of the leukodystrophy that he has. What I would like to get is some type of monitor so that when it happens and I am not right there with him or during sleep, I will know and be able to make sure he is OK, in case the time comes that his body doesn't kick in and start breathing. She then told me that my next appointment with Dr. Narayanan is in April!

So, now on to the Aug comm device. This story actually began back in August when he was evaluated for the device and the process of getting it began. We were told that since it was a new product, it may take a few extra weeks to get it. Fine. It actually arrived just two weeks ago . John made a special trip into Phoenix during his lunch break one day to pick it up since we didn't want to wait until Bryce's support coordinator was able to get it to us. We were so excited to have it. That night after the kids went to bed, John and I opened the packages and began to check it out. We quickly found that we would not get too far without some instruction on how to use it. There was a note with a name and email address of the lady from the company who would be doing the training for us. So I emailed her right away. Tuesday morning I got an email stating that normally she would be over within the week, but that her grandmother had passed away and she would be going to Kentucky for the funeral. She gave us a website that would give us a little bit of direction for us to look at until she was able to come out. We looked it over, but still couldn't get it to work right. So that brings us to this past Thursday, almost 2 weeks after picking up the device. Amanda, the lady from the Tobii company came, looked at the machine and asked if that was all we had received. It ends up that for the eye tracker part of it to work, you need a mount...either one for the table or wheelchair so that it stands up right and can track his eye movements. We were suppose to get one for his wheelchair, but it hadn't come. We went over this with the person doing the ordering back in Aug. and that is why we switched the type of wheelchair we got for him. She said she was sure the DDD-aug comm person wouldn't have ordered the device without a mount, so she would check on it for us. The email that set me off this morning was the one that said that unfortunately they had done just that!!! Here is a piece of the email stating what we need to do now in order to get a mount so that the device will actually work:

What needs to be done is the family needs to contact their support coordinator and request a mount evaluation. Then the mount would be decided upon and the report sent to DDD-aug. comm. They order the mount and it is delivered to the support coordinator who contacts the family to pick it up. Then, the support coordinator authorizes a mount installation and someone goes out to install it. I would not want the desk mount ordered for him unless his family has really looked at all their options. Ideally, the mount would be mounted to his wheelchair that is why they got the wheelchair instead of the KidKart. Then he is able to use his device in more situations and locations.

Grrr! Duh! We had already decided on which mount. Why would we need a mount evaluation?! We already know that we want the mount for the wheelchair. That is what they had told me they had ordered clear back in September! Amanda actually suggested that we request the table mount as well as the wheelchair mount so that he can use it both in and out of his wheelchair which I personally think is a good idea, so that is what I am going to do. Also, I have decided to do this because I think the table one will come much faster than the wheelchair one...I think. I know the state is not going to think he needs both, and thus not want to pay for both, but at this point I really think that is what would be best for Bryce, so that is what I am going to try for. When he no longer needs it or is able to use it, I will be returning it and they can give it to someone else, so I don't see what the big deal is. We'll see what happens when I call on Monday.

So basically it was all of this stuff put together, along with the fact that I had been up multiple times throughout the night with various children and then up for good at 3 am with Annalise, along with all the other family things you deal with on a daily basis. I had just hit my limit.