All of us do it, regardless if we have a healthy or special needs kid, we all advocate for our child. If you would have asked me what advocating meant to me before I had Kai I really wouldn’t have had a very good answer. For Bei it has been simple; finding the best heart surgeon, and working with his pre-school teacher regarding his separation anxiety. It is pretty straight forward stuff. Advocating for Kai on the other hand has taken on a life of its own and has almost become a full time job. It means that I assemble the best possible team of professionals, so that Kai can meet his full potential. For him it includes everybody from his primary care doctor, ENT doctor, speech therapist, occupational therapist, physical therapist, audiologist, neurologist, geneticist, dentist, school district, insurance company, billing companies and even his pharmacist. My job then becomes to assess their ability and their outcomes. Are they working towards getting the best care for Kai? Are they meeting his needs? Are they following up with the care they committed to? If not, I need to move on and find better care. I have pushed back on doctors and told them they are not meeting my expectations. I have laid out expectations and said you need to meet these or I need to find a new doctor. It is time consuming to move to new doctors or therapist so I want to resolve issues through communication if I can. Sometimes I "fire" them by moving onto the next doctor or therapist.   I feel like I have witnessed everything from apathy to disrespect to going above and beyond the call of duty.     Having a special needs patient can be time-consuming I get that.  My job is to find those professionals that are willing to put in the time and effort to ensure my child get the best care possible.   

I will give you an example of poor care and good care; our claim for speech therapy has been denied by our insurance company. Now this is a little boy that is non-verbal at 2.5 years old, is diagnosed as severely hearing impaired in both ears and we can’t get him speech therapy. I call the insurance company and they tell me if I jump through rings of fire, swim with the sharks and then click my heels three times I may get it approved. Which in real people speak means that I need to get my primary care doctor involved and the speech therapy billing personnel involved in the process. So fast forward and nobody follows through and does the correct paper work and they tell you it is sent and the insurance company tells you they never received it and then the speech people say okay I will send it this week and your primary care doctor never returns your multiple phone calls inquiring about where his paperwork is for the insurance company. True scenario and Kai is still being denied for speech therapy.   Thank you all for your incompetency...

Now let me tell you a positive story, one where the people involved have continually gone above and beyond my expectations for care for Kai.   His ENT doctor wants to do a CT scan of Kai’s head to see if they can determine the cause of his hearing loss. When I initially went to the International Adoption Clinic with Kai one of the things that Doctor Judith E told me was that Kai should never have another CT scan in his life unless it is life or death. He already had three CT while in China and she was concerned about the radiation. So when the Ear doctor told me he wanted to do the CT scan I told him I had to think about it and I would get back to him. I immediately called Beth who is the nurse coordinator for Dr. Judith E at the International Adoption Clinic and told her the situation. She told me that Dr. Judith E was out of the country but I could expect a call in about two weeks if I could wait that long…I could. Two days later I got a call from Beth telling me that she had emailed Dr. E while she was on vacation in Taiwan about my concerns and proceeded to give me Dr. E’s response! Above and beyond! Beth is the same person that I called when Kai had a grand mal seizure at our primary care clinic and they told me to get to an Emergency Room immediately. I felt like they pushed me out the doors with this baby who was blue and hardly breathing.   My head was spinning, I didn't know where to go and felt like crying.  I decided to call Beth at the International Adoption Clinic and she told me to come to U of M and they would have me registered and I could walk right in. Both she and Dr. E came down and checked on Kai. Dr. E even did an overall physical even though there was an emergency doctor there too. Dr. E was also the one that believed me when I said Kai was having seizures and I showed the tape to her and she immediately called the neurologist who a week before just thought he was having fainting spells. When people treat your child with such respect and care like Beth and Dr. E it just warms your heart. To this day I can’t even think about Beth and Dr. E without getting misty eyed.   How can I ever thank them for all they have done for Kai?   They have made a huge difference in my little boy’s life by practicing medicine the way it should be practiced.

One last advocacy note, I switched audiologist and LOVE Kai’s new audiologist! She has a passion for children. She honestly is just busting in her enthusiasm to do what is right for Kai.  She called me at home to continue our conversation after we had just spent 1.5 hours together because she had more thoughts about Kai's care that she wanted to share with me.  ABOVE AND BEYOND!

By the way, Kai is not wearing his hearing aids until his new molds are in from his new audiologist.  His old molds didn't fit properly and were causing alot of feedback from the hearing aid. 

1 comment:

Beth said...

Glad to hear that things are getting straighted out. Go Mama Bear!!!!