I had really believed that I had worked through my issues of anger at the medical community over the extreme negligence that has been displayed during Nicole's life. Obviously, I still have a way to go....
After yesterday's, prescription debacle and the anger I have at the doctor who either personally wrote the script for a narcotic for Nicole's site pain or had someone else write it and he just signed it without making sure it was correct and the consequences being that Nicole has to take a narcotic that makes her feel worse with side effects of nausea and dizziness and doesn't seem to manage the pain all that well. It is just an unacceptable mistake in my eyes. I realize that we are all human and we all make mistakes and I can accept that and I try very hard not to have unrealistic expectations but when almost every single doctor (and she has seen a lot of them) in Nicole's life has not done something they should not have, not told us something that would have made a difference or made me question things more etc. this gets past the point of just a simple mistake.
Yesterday, was a day that really tried my patience and forced me to see I still have a lot of anger which I didn't realize until this morning. I have a goal for 2013 to get my house declutter and to get organized so I can feel more in control of the chaos that is my life. I have been working every morning for 30 minutes on getting Nicole's medical records in order. I can almost see the light at the end of the tunnel. I have been getting the records from her former doctors together and I was working on the allergist. She saw this doctor from 2001 until 2011. Nicole has only a few allergies on paper but one of the worst is to dust mites and she was in the office once a week for at least three years for allergy shots. In 1999 when she was originally tested while in the hospital for double lung bacterial pneumonia her IgE levels were 441 the normal range is between 2 - 25. Her pediatrician said "she has allergies we don't even know about" The IgE is one of the five subclasses of antibodies. IgE antibodies are found in the lungs, skin, and mucous membranes. They
are associated mainly with allergic reactions (when the immune system
overreacts to environmental antigens such as pollen or pet dander) and
parasitic infections. I was going through her records that I received at some point in the last few years but I believe they stayed in the envelope that they came in because I didn't have a reason (in my eyes to really look at them) I believe these records were through 2007. This doctor was not the doctor who diagnosed her with asthma he just treated her for it. If you have seen an allergist then chances are you have had a pulmonary function test (PFT). I was looking through the PFT's that she had taken and during 2006 - 2007 she had at least three PFT's that had an interpretation saying this: "possible EARLY OBSTRUCTIVE PULMONARY IMPRAIRMENT. This is suggested by the reduced FEF 25 -75 with a normal FVC and FEV1 (I have no clue what that means). This finding can be due to a mild degree of small airway disease and/or the earliest stages of emphysema. This may be reversible in nature; therefore, REPEAT TESTING FOLLOWING BRONCHODILATOR ADMINISTRATION IS RECOMMENDED. This interpretation is only valid upon physician review and signature. " Now I ask you ....... why wasn't I told this??????? Isn't it a little bit of a HUGE red flag when they are interpreting emphysema in a child of 12 years old. I don't know of too many of them. I also don't recall her ever having any bronchodilator administration. This is just another example of negligence on the doctor's part. If I had known this I would have asked more questions and had her get more testing etc.
My concern lately has been the fact that Nicole has had so many GI issues. What have they missed pertaining to this? My fear is that she has other issues going on. She has been seen twice in her life by GI's and the first one I blame for the first real mess up with her diagnosis being missed and this is where her congenital heart defect was missed and she probably also had her PH at this point. The second GI doctor who I really, really liked was much more on top of things but all the tests that she did came back normal so the mystery remains and is assumed (which we all know what that means) that it is the Tyvaso (which she was on at the time) and other PH drugs causing her stomach issues.
The feelings of helplessness and the lack of support I feel from the medical community is one of the hardest things to accept. I have to fight and fight for everything. I know that I am not alone in this fight and there are many others with PH or any other chronic disease that must go through what I do. The Bible says that God is our vindicator but as of yet I don't feel that there as been any closure or justice for Nicole.