Thursday, May 8, 2008

Doctors, doctors and more doctors!

So, I am finding it hard to keep plug in along with all the health issues that still need answers. I finally set up an appointment with a Geneticist here in Yakima. I made a special appointment about a month ago with Cameron's PCP to discuss the further testing I feel absolutely necessary for Cameron's well being. To this day I have not heard back. Despite numerous attempts to get the "answer" as to if his PCP felt it necessary. I finally called and set the appointment up myself. Let's just cross our fingers and hope that when the PCP receives the "referral request" they just take care of it.

Is this neglect? You tell me what you can comment on this section of my blog. I think that because Hemihypertrophy is a disorder of the body's normal controls of growth, people with this condition can have a higher rate of cancer. If these "cancers" are not detected in time it could be too late. My proposed care to the PCP was instead of ultrasounds every 6 months he should have them every 3 months (a normal time frame for a child with this disorder). Also, I questioned the 6-8 week blood tests and why no one feels it's important for him to have. The Dr. said because the diagnosing Dr. felt the ultrasound was sufficient. Now understand, this PCP has NEVER had a patient with Hemi. So, why am I still with him.......because with-in my health plan the options don't seem much better. But, believe me I am working on it.

On a side note, Cameron is doing well. He is sitting up all by himself and just as happy as can be. The geneticist we are seeing at the end of May will hopefully be able to answer all my questions. One I really want answered is if they think this is isolated hemi. 1 in 86,000 people have isolated hemi.
So far, what I have learned from all the issues with Collin and Cameron is to take action for them since the doctors will not. I am not just angry and wanting my kids to get special care, I just want answers. Is that too much to ask.
Was covered head to toe with an uncomfortable rash and to top it off his joints were in so much pain he screamed when we moved him. Even after being admitted to the hospital they would not officially diagnose him. It's hives, no it's HSP no it's Hives. 3 Er visits, 1 admittance to the hospital, numerous visits to the PCP, 1 visit to Children's is Seattle and a completely different doctor in Yakima. Guess who finally figured out what Collin had..........Leslie his Grammy!!! They dropped the ball on all levels. They sent our info over the allergist with a 2+ month waiting list. No rush, just hung us out to dry. I had to make the appointment in Issaquah to see why Collin was getting sick every other day with anything and everything. Even now, it's not a closed case, because.....can he have his immunizations? Do I trust anything that comes out of the Doctor's mouths.
Collin is doing great and surprising me everyday! If I don't take some time to breath and let some of this heartache just sit on the sidelines, I may miss out on my kids. Already, I feel my tolerance has changed due to my inability to cope. I MUST get control of myself a fix this! Any suggestions on how to change my attitude?
Thanks for your prayers and good thoughts.