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!!!
It is sad that the CDE didn't read between the lines of the other post. Between the lines was a scared mother that just needed some understanding.
I am so THANKFUL that you have an endo to go to tomorrow that you know. That you can talk to. That listened rather than burned bridges. For the record...I don't think you are the bridge burner here. Love you friend!
Ok first. Im pissed. I reread that post 2x and u didnt say anything wrong!
Youre a wonderful mother and pancreas and burn bridges I dont believe you did. Why shes acting like that I dont know but I know its not your fault.
Youre NEVER alone.. I am always here any time if you need anything! But you know that already.
I love you! And well #youregangsta period ;)
That's really too bad. Your blog is a place to vent and get out your thoughts and emotions in order to understand them better...the main thing you are trying to do is help your kid while still allowing some normalcy. I think you a least deserve a second chance! That makes me sad, but hopefully you will find someone else that's a good fit for what you and your son need. Good luck!
I'm not sure what to say except I think that it's tough - I think it's tough dealing with all we have to deal with and being so perfectly civil with etiquette on our less than adequate sleep and high anxiety, I think it's tough saying what we need to say in a way that really expresses the truth without stepping on toes...
I think you've done nothing wrong. I think things work for the better even when we can't see that in the moment.
I hope you're having a more lovely evening after you typed all of this and are now able to have a fantastic rest of your week :)
Just FYI - we had a sensor break off in Willie's arm. It has only happened once, but it does happen!
Oh Laura - I wish we lived closer because it is soooo lonely having a child with diabetes. I totally understand that feeling.
I truly hope that your appointment goes fantastic!
If there is one thing I've learned in the past few years is that you should never regret anything that you put on YOUR blog or site. I made the mistake one time of actually shutting down The Diabetes Dude because a mother of two kids with diabetes sent me a nasty-gram that I was causing harm to my son by calling him "The Diabetes Dude". She clearly didn't get it, didn't get what I was doing, didn't get the fact that Noah's site, is, well, Noah's site. We actually shut down the site for about two days and my hubby said I was being rediculous. This woman wasn't putting her heart and soul into the site, we were and more importantly, Noah was.
Point being-YOU did NOTHING wrong....NOTHING, so don't change being you because you think it may hurt someone's feelings.
Been there. Our Endo read a complaint on our support group website where I complained about the front office girls who wouldnt schedule me an appointment because I didnt have our Cobra info yet. They told me to call back when I had proof of insurance!! Somehow it was misconstrued by other posts and parents that jumped in on the complaint wagon...
My complaint was ONLY about insurance and front office girls!! Somehow our Endo felt like I was talking trash... WHAT A FREAKING MESS!! But, its ok in the end I guess...our Endo since moved from that large practice within the Childrens Hospital to her own practice. THANK GOODNESS.
ANYWAY, I hear ya. We shouldnt have to watch what we say on OUR blogs when all we are doing is speaking from our hearts and best interest for our childrens health and emotional well being!
I am so sorry...I can feel the pain and alone-ness in your post. I feel really angry reading that your CDE got so caught up in her own issues that she left you to fend for yourself with Nate. That is just ridiculous. They have no clue what we go through each day. And you didn't even say anything wrong! You are a worried mom, doing the very best she can for her kiddos.
I hope you have a great experience with your new (old!) endo and CDE. Big hugs to you, mama.
Holy macaroni... oh, this is Heidi not Mattie. I am surprised at Mrs W's reaction to your blog, really? get mad because your not a doctor and you don't understand?
I think her behavior is wrong and that this is a blessing, you didn't burn any bridges, and if she was adult enough she would have called you or emailed you and talked about it or even stated that it may have hurt her feelings. your not a bridge burner your a mom and a good one.
Good luck with the new ENDO.. and let us know.
I am so sorry that happened to you! I reread the letter 2 times as well and didn't see anything that she should have been upset with. In addition lets discuss her lack of professionalism. She has a patient whose parent has called several times *not just this time* and she hasnt called back. REALLY! Lets see who is acting like a child. You were raw. You said she reads your blog which means she should know what you had been going through and she choose to take your rawness as a personal attack. Instead she should have taken the chance to educate more on what she meant by those things. I have to say there have been times Ive been tempted to give my endo my blog but have always decided not to for fear I would need to vent one day. I AM SO SORRY this happened!
Wow... WOW! I remembered the post from Sept... I went back and re-read it now. I think that Mrs W's reaction was unprofessional and childish, personally. And the fact that she ignored your pleas for help recently is just inexcusable. Really sad, actually.
YOU ARE A FANTASTIC D MAMA, LAURA! Don't ever doubt that. We will always be here for you, my friend.
Let us know how the appt goes!!! (((HUGS)))
Oh Laura...you are not a "bridge-burner" at all. I am with Jo...people need to get over themselves. Your post was in no way offensive. You were a mom who was worried about her son's well being. 'Nuf said.
I hope it goes well today. I am looking forward to hearing ALL.ABOUT.IT.
Here's to a caring, selfless, it's not about me, child concerned Doctor! Have a great visit!
Oh, and I agree with Lora.....
**(and sometimes, a person's degree is so far up their butt, nothing but confetti comes out of their mouths)
A blessing indeed to be moving on!
It's funny...this road. I have bridges that I worry have been burnt because I've had to advocated (loudly) for my daughter.
In reality, however, you didn't burn anything. She did. She didn't respond to your cries for help....and that was her J-O-B. It was her job, whether she liked you and your blog or not. PERIOD.
It'll be good to move on. I'm willing to bet Dr. T has been around this block before...as parents we have defense mechanisms and, sometimes, that's just the way it is.
Forgive yourself and put it behind you. Then move on and do the best you can with what life throws your way in the future.
Laura - I am so sorry you have felt so alone in caring for Nate since September and I am SO glad you are finally able to return to someone who you know will give good supportive care to you and Nate now. I agree wholeheartedly with everyone - you did nothing wrong. I am shocked that you were unable to get a response from your CDE when you tried so hard to communicate and rectify things. Hope your first visit back went well..
Just a Mom
I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.
The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.
Please consult your doctor if you have any questions or concerns about your health care options.
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