Her brother saw the cardiologist on the 1st and we were told they found nothing but scheduled him for a stress test to rule out any cardiac problems and see if there might be an asthma problem. 

Got some good news that the social worker at Mary Bridge Children's Hospital was able to get us an appointment to see a psychiatrist for a 1 hour session and that is scheduled for May. Hopefully they will see the need to have more sessions.

Amber now states she has no friends at all at school. Don't know what happened to her one friend but would anticipate the pain has given Amber an attitude that no one wants to deal with. Either that or there was some other falling out. Not my place to ask and I know Amber wouldn't say anything even if I did. She is now focused on finishing the school year so she can go see her childhood friend that lives a hundred miles away.

The new medication (Trihexyphenidyl, you can see why I couldn't remember the name) is not working. It has been 2 weeks and Amber has noticed that for maybe an hour she feels slightly better but then back to the same old pain and involuntary muscle movements. She is taking the vicoden and muscle relaxer daily and wearing the e-stem daily as well. It helps but she still cry's herself to sleep.

I got a call yesterday from the office of Rasmussen our state legislator to whom I sent an email some 7 months ago. The aide, Michelle Burhimer, was cordial and apologetic and stated they never received the email I had sent. We spent some time on the phone but nothing constructive was said. Later that evening I got a call from Campbell himself and he too stated he never got the email and was somewhat apologetic but became defensive when I suggested it was not brought to his attention but most likely round filed. I stated I used the State legislatures website email form and copied and pasted it so no typos and I never got a Mailer Daemon stating the email was not delivered. His tone of voice gave a hint he was upset but he continued to profess he never received the email. Well a 'he said, she said' situation and I won't belabor the point. He professed he would like to be of help though he was not sure he could do anything. As the school year is now ending and 7 months have passed I could not think of anything he could do either. He said if I ever needed to contact him to call him directly and he gave me his personal email. I appreciated his desire to help but at this point it is a matter of unringing a bell. 'Better late than never' does not really apply here.  I updated the section regarding the non-response of both Rasmussen and Campbell on the Amber's Story page. 

Well apparently this site is getting more notice than I had thought. At any rate the politicians are upset and I suppose if that gets Amber any consideration then it was not in vain. Still at this point in time we have so many trying so hard I cannot see what they can bring to the table that will be of any use now. I will however keep the information in case I find I need some help in the future. 

The Dystonia has spread up her left arm to her shoulder and she is in considerable pain.

On the 24th we noticed her hand turning blue on 3 separate occasions. I figured it was the Dystonia somehow cutting the blood flow in a vein and as the oxygen was depleted the hand turned blue. It had to be a main vein further up the arm to affect the entire hand. As she was wearing an orthotic we could not see if this was involving any of the lower arm. It would last a few minutes then back to normal. As Amber has Factor 5 Lieden which is a clotting disorder this gave us some concern. The wife called the on call nurse to see what we should do and was told to take her to emergency. The wife did this but the doctor at the hospital was a jerk. According to the wife he should have his Dr. diploma tacked to his ass and be digging ditches for a living. I had to get involved by phone. We knew there would be nothing to see on a ultra sound or cat scan unless it was happening at the time these were done but the DR. said if 'we' wanted them he would order it but against his position and so 'we' would have to pay the $500.00 to have the ultra sound done. I got involved on the phone and discussed options like heparin to stop any clots before they occurred, just in case the blood flow was blocked long enough to form a clot, or a stronger muscle relaxer to keep the Dystonia at bay till we were able to have her seen by her primary care DR.

The ER Doc latched onto the heparin and said he didn't think it was necessary but if that is what 'I ' wanted he would order it.

I then talked with the wife and because of the possible complications of heparin we decided to ask for a stronger muscle relaxer instead. The ER Doc said OK and ordered Valium. Amber was given a pill at the hospital . While waiting to be discharged a nurse showed up with a heparin shot and if it weren't for quick action by the wife she would have been given it. The wife was able to stop the nurse in time. The Doctor, 'and I use that word with reservation', told the wife he couldn't release Amber till she got the shot. He had apparently forgot to tell the nurse not to give the shot as he forgot we had decided on a muscle relaxer instead of the shot which she had already gotten. He was upset with the wife and signed the release forms. Before doing so he asked Amber what her pain was on a 1 to 10 scale and Amber said a 5. He took exception to that and stated he didn't think her pain was so strong as she was smiling. What he was told by the wife was that the 3 family members there, wife , grandmother, niece, were engaging Amber in conversation and they were trying to lift her spirits by telling jokes. The DR. apparently did not buy it and stated he thought she (Amber) was lying which set off the wife and so the DR. left. Also according to the wife the Dr. seldom spoke to her about anything but to Amber. Amber is 16 and a minor. The wife should have been the one he talked to as she would be the one approving anything done. But as the Dr. never did anything he wasn't told to do by the wife or by proxy by me, it really didn't matter where he directed his hot air.

There was a lot more than this to the events but I wasn't there and the wife said she and my niece were going to file a complaint with the hospital of this Dr's care of Amber. ( I doubt this will be done as we have so many other things on our plate and this is so trivial compared to those) Apparently he made no decisions of his own only said he would do what we suggested. He was rude and had a terrible bedside manner. He also did not make clear what he was going to do and made it known that we would be responsible for any tests or bills cause we were the ones requesting them not him. Left to his own devices she would not have received any care at all. With his surly attitude and lack of compassion together with inept abilities I would think if he was to practice medicine at all it should be in a prison.

If I had not been through the blood clots in my right leg and right arm I would not have been aware of what a DVT was nor what the complications would be and apparently the DR did not explain either to the wife nor did he fully explain or even give a diagnosis nor make any decisions as to Amber's care. We made the decisions and all we needed him for was to write the prescription for enough valium to last the holiday weekend till she was able to see her primary care doctor.

For those of you who find yourself bucking an inept Dr. do not let them get away with doing nothing. If you are not familiar with the terminology and what is going on ask questions and if you have to get another DR. do so. If you know something of what is going on do not be afraid to interject your opinions.

Earlier that day we had words of her not having been informed of Tami going over to her nephews and his fiancés to have a talk with them of how to get their finances back on track. Tami felt it was an adult conversation that did not involve Amber and since she knew Amber would want to go she told her she was going out to lunch with Her nephews, fiancés, mother. The "Aunt" in this monologue. The "Niece" is Tami's , nephews fiancé. 

When I inadvertently spilled the beans Amber called her mom found out the truth and was in a hissy. I got upset and told her to grow up. That sometimes we keep things from her to avoid problems just as she keeps secrets from us. This just exacerbated the problem and her Dystonia flared up.

The 26th was not a good day.

The wife left early this morning to see her mom at the hospital and the kids are at school as I write this. I suppose the only bright spot is I am now using the wheelchair less and am walking more with a walker. It is painful but like they say 'no pain, no gain'.

Well had 3 doctors appointments for Amber at Children's Hospital in Seattle. The first was a psychiatrist and she said as Amber was being seen at Mary Bridge in Tacoma she didn't want to step on any toes so she would just send a recommendation and that was it. Then on to the Therapy unit which also said that since she was being seen at Good Samaritan Children's Therapy They had nothing to contribute. With some talking I got them to recommend Amber get a script for an E-Stem and TENS unit combination. 3rd  appointment with the Dr. we saw some 3 months before; the one who said he did not prescribe pain relievers... Well he prescribed a pain reliever this time. Will have to check on the name but it is a blood pressure med that has had some effect on nerve pain. Amber is to take 1/2 pill twice a day. Not a therapeutic dose in my opinion but we have another appointment with him in a month. He also gave us a script for the E-stem/ TENS unit but now we have to see if we can get it???

So we got something for an entire day and a long drive but we could have done just as well closer to home if the local Doc's would be more proactive.