A month ago I came up with 2 missions. 1. Was to confirm if Sadie has mito disease and 2. To figure out what PCH type she has. Over the last month or so I have talked to many of Sadie's Dr's and MA's/nurses/counselors/office managers. They are all informed and familiar with Sadie's case and how frustrated I am with the lack of support that I have gotten from them. Some of them were a little surprised with what I was saying and some of them agreed that their office has had problems and needs help. All of them were apologetic and agreed to help me more. I thought to myself I will believe and forgive once I see results. Well...
This week has brought good news and unexpected news. I got a call from my pediatricians office saying that Sadie was approved to see a Mito Dr, just not the one that I had requested. I was a little bummed at first because I really wanted this specific Mito Dr cause I have heard and read many good things about him. I wasn't about to complain though, because I will take what I can get. She gave me a choice of a couple of Dr's that the insurance approved and then told me who Sadie's Dr recommended. I went with her recommendation. Sadie will be seeing a peds neurologist that works with mito kids and she is located at U of M . I'm happy with this. It is "close" by (2ish hrs away) and that is where she is probably going to be having her heart surgery (which was questionable because of the mito disease, but if her mito Dr is there in the same facility it might be a better possibility now). An appt with this Dr. has been made, but of course since it is a specialist it takes forever to get into them. Our appt is in August. I think this is ridiculous, but like I said I will take what I can get and just be thankful that we even have an appt.
Then my unexpected, good news is that after just about 11 months I get a phone call from the neurologist office that they finally got more genetic testing approved on the muscle biopsy that was performed last April. I didn't even know that we were still working on that. I stopped pushing for that test a long time ago (mostly because I heard that muscle biopsy testing was "a thing of the past" for diagnosing mito disease, but I wasn't about to argue about the testing). I guess after my chat with multiple people in that office they thought they would try to get approval for it without me knowing. They got it done. I'm impressed with the this new girl that I'm working with. She is kind of a "bull dog". As in she knows what she wants and she gets it done and she does not take no for an answer. That is my kind of girl! So after this surprise phone call and her informing me of the muscle biopsy, she then goes on to tell me that they are trying to get approval of a genetic blood test that tests for many mito diseases. "What!?" I was told there was no such thing. So who is lying to me? Not sure. At this point I don't care. Better late then never. I also told "the bull dog" to please continue on getting that approved, but also talk with genetics because they are trying to get a certain blood test approved for me to and the two tests might overlap. She agreed to talk with them and keep me informed of what is going on.
FINALLY! I feel like we are getting somewhere. Don't underestimate the power of a determined mom. It may take me awhile, but I will get there. I WILL get what I want when it comes to my girls!
*Another lesson learned from Sadie. Determination! It may take her a while to do something, but she will get there.
This week has brought good news and unexpected news. I got a call from my pediatricians office saying that Sadie was approved to see a Mito Dr, just not the one that I had requested. I was a little bummed at first because I really wanted this specific Mito Dr cause I have heard and read many good things about him. I wasn't about to complain though, because I will take what I can get. She gave me a choice of a couple of Dr's that the insurance approved and then told me who Sadie's Dr recommended. I went with her recommendation. Sadie will be seeing a peds neurologist that works with mito kids and she is located at U of M . I'm happy with this. It is "close" by (2ish hrs away) and that is where she is probably going to be having her heart surgery (which was questionable because of the mito disease, but if her mito Dr is there in the same facility it might be a better possibility now). An appt with this Dr. has been made, but of course since it is a specialist it takes forever to get into them. Our appt is in August. I think this is ridiculous, but like I said I will take what I can get and just be thankful that we even have an appt.
Then my unexpected, good news is that after just about 11 months I get a phone call from the neurologist office that they finally got more genetic testing approved on the muscle biopsy that was performed last April. I didn't even know that we were still working on that. I stopped pushing for that test a long time ago (mostly because I heard that muscle biopsy testing was "a thing of the past" for diagnosing mito disease, but I wasn't about to argue about the testing). I guess after my chat with multiple people in that office they thought they would try to get approval for it without me knowing. They got it done. I'm impressed with the this new girl that I'm working with. She is kind of a "bull dog". As in she knows what she wants and she gets it done and she does not take no for an answer. That is my kind of girl! So after this surprise phone call and her informing me of the muscle biopsy, she then goes on to tell me that they are trying to get approval of a genetic blood test that tests for many mito diseases. "What!?" I was told there was no such thing. So who is lying to me? Not sure. At this point I don't care. Better late then never. I also told "the bull dog" to please continue on getting that approved, but also talk with genetics because they are trying to get a certain blood test approved for me to and the two tests might overlap. She agreed to talk with them and keep me informed of what is going on.
FINALLY! I feel like we are getting somewhere. Don't underestimate the power of a determined mom. It may take me awhile, but I will get there. I WILL get what I want when it comes to my girls!
*Another lesson learned from Sadie. Determination! It may take her a while to do something, but she will get there.
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