Hello friends - it's been a while. Lately I've been overwhelmed with life. I hate it when life gets in the way of my blogging. Grrrr!
So, I'm a bridge burner. At least that's what someone told me last week. It made me sad to hear those words. I don't want to be a bridge burner. Apparently, my social media tendencies get me in hot water.
I'm a nice person. Really quite likable and pretty funny too!
Well, that's what my mom says anyway. <---- Love her!
When we left Children's Hospital of Dallas I wrote a letter to them here on my blog. It was honest, from the heart and how I felt and still feel about our experience there. I don't regret it. From what I hear not a lot has changed with the Endocrinology department there. I am about to find out.
We got our children insurance through CHIP starting in January after being without insurance since September. I was excited to have coverage after being without for 3-months. Until I found out we would no longer be able to see our current endo.
I knew that Dr. X was not on the CHIP provider list but my parents had offered to pay for Nate's appointments so I thought all was right in our world. Boy was I wrong. When I called Dr. X's office about an prescription refill I mentioned that we would now be covered through CHIP. The next thing I knew I received a call from the office manager letting me know that Dr. X would no longer be able to see Nate. I explained that we would self pay but apparently we are not allowed to do that.
I was devastated. I called our CDE, the nurse and left a message for the doctor. I didn't hear back. The hardest part of this is that when we left Children's it wasn't really for a new doctor. I liked our doctor just fine. It was really for the CDE.
When I met our new CDE we became fast friends, she seemed to really care about Nate and his health. The best part was that Mr. Nate really seemed smitten with her too. This was the ideal relationship for me. It was exactly what I had been looking for and had been missing at Children's. I just wanted someone to care about Nate and know his name -- not just his ID #. It was personal, it was open and I could call or text her anytime. She taught me so much about diabetes and how to care for my son. I was in love! :) Total CDE Crush!!
Until . . . again with the bridges.
Apparently this post made her SO mad that she decided to just stop. She was done with us. I spoke with her 1 time about the post and that was the last time we ever spoke. I left numerous messages that went un-returned. I texted . . . I got crickets.
I'm not sure I can articulate how I have been feeling about this. I cried. I'm sad. I feel so alone. All I have ever wanted was to get the best care possible for Nate. For me that includes a personal touch. Is that too much to ask? I feel really alone in Nate's diabetes right now.
Maybe I'm just spoiled? Our pediatrician is a personal friend so I can chat with her anytime. I never - ever expect any special treatment from her but it is always nice to walk into her office and know that she genuinely cares for my children.
Sadly, with CHIP I can't even take my children to our pediatrician anymore. Everything is changing -- too many changes. I took Nate to his new Primary Care Physician just to get a referral to go back to Children's and she clearly knew very little about T1. Which is ok since we won't be seeing her for Nate's diabetes.
There's always a but - right?
A few weeks ago Nate's DexCom sensor broke off in his tummy. I called DexCom but the CS rep assured me that I must have been mistaken. Hmmm - ok. I wanted to believe her but a little while later I found a hard lump on Nate's tummy where the sensor was on his tummy. Hmmm - - - not good. We haven't seen our Dr. at Children's yet so the staff there won't talk with me. I texted our CDE and explained the situation ----I pretty much begged her to respond. I got nothing. I explained that we were between endos currently and our new PCP had no idea what a DexCom was so I just needed a little advice. Still nothing!
* The office has been very accommodating with Nate's rx refills -- we've been stuck in this Endo limbo for a while and Dr. X's nurse has been very kind and very helpful. Children's couldn't sign off on any prescriptions for Nate since he hasn't been seen by a doctor there since 2009 so I had to call and ask Dr. X to write all new scripts for CHIP.
That's when I realized that my blog may be causing harm to Nate's care. Is this possible? Should I not be allowed to come here and vent my frustrations? Express my feelings? Sadly,I guess not!!
I am thankful that our CDE was so thorough with Nate's care while he was her patient. She taught me so much and that information in invaluable! We haven't seen an Endo or a CDE since September. I've been caring for Nate on my own. Making all decisions, changes and adjustments on my own. Still I can't help but feel alone.
Thank goodness for the support and knowledge I receive from the DOC.
Tomorrow is our 1st appointment back at Children's Hospital. I am so thankful for Nate's doctor there. We haven't seen her since 12/2009 but when I emailed her and let her know we were coming back I was excited when she promptly emailed me back and said that we would certainly keep the lines of communication open this time around.
We are going to Children's Legacy instead of Dallas so I am hoping that will help make going back a bit easier. It's just 5 minutes from our house. I'm actually really excited to visit with our original endo. She has known Nate since his dx back in September of 2009 and has always been kind and caring.
It will be nice to have someone in our diabetes corner again. I don't like to be so alone!
I'm thankful that she read that open letter to Children's responded to me and passed the information along to the appropriate people there. We walked away from Children's but she did not abandon us. She never stopped caring or asking about Nate and how he was doing. We are going back and she is welcoming us back. I could not be more appreciative.
I'm actually looking forward to our endo appointment tomorrow. I don't think I've ever said that before.
Although I will chronicle our life back at Children's Hospital here on HWAP I am determined not to burn anymore bridges!!!