The Houston family has officially left Children's Medical Center of Dallas & we could not be happier.
In an open letter to Children's I wrote the following but then decided not to send it. My momma read it and her response was "if you don't have anything nice to say . . . well, then don't say anything at all."
So, since I am not going to send it I thought I would post it here. Hey - at least it makes me feel better.
What are your thoughts --- send it?? Don't send it?
To Whom It May Concern:
I am writing to inform you that my son, Nathan will no longer be a patient of Dr. T or Children's Medical Center of Dallas. Nathan's medical records have been transferred to his new endocrinologist and we have already had our fist appointment.
I am also writing to let you know that this is the 1st time in the past 8-months that I feel really good about my son's health care options and his treatment plan. As you know, Nate was diagnosed with type 1 diabetes at 14-months of age. In a few short months Nate will have had type 1 for longer than he has not had it and to me that is huge. Nate will have diabetes his entire life --- that will be a lot of highs and a lot of lows & hopefully a lot of in betweens too. As a mom this diagnosis was devastating and from the beginning I have had nothing but problems with Children's Hospital and their level of service and care for my son.
On diagnosis day we went through the ER and waited for hours before being seen, we were then taken into a small room with a nurse that spoke little English and watched while he poked and prodded on our screaming son. I won't go into all of the details but it was certainly the worst experience of my life. Once we were transferred to a room the experience got slightly better when we were met with the smiling faces of the nurses working on the 6th floor. Unfortunately, our relief was short lived once we had a chance to look around the small, cramped and disgustingly dirty room we were given. We spent 3 long days in this dirty room with our infant son, trying to keep him off of the filthy floor and away from the filthy bathroom. We were also bombarded with hours of training after sleeping for only 2 hours on the very small, very dirty and very uncomfortable chair/bed that was in our room.
The educator that came in the 1st day gave us a ton of information and we tried our best to absorb it all but it was very overwhelming. We felt that she was frustrated with us because we could not give her our full attention but the fact of the matter was that Nate was in the room at the time of training and he required a lot of our attention too. The hospital was on lock down due to the swine flu epidemic and we were not allowed any visitors for the entire time we were there. What were we supposed to do?
The educator that came in on the 2nd day quizzed us on the things we had learned the previous day and then gave us more information to digest. At this point I had had a chance to go home and collect myself enough to do a little bit of research on type 1. We had a lot of questions for educator #2 and when we asked them she made us feel completely stupid and incompetent. It was not a good feeling.
Once we were released from the hospital we came home and sorted through the MANY prescriptions & instructions we were given and began our new normal life with a son diagnosed with type 1 diabetes.
We were devastated, confused, scared, and dealing with a 14-month old with a chronic illness and a complete new lifestyle for our simple family of five.
Then the nightmare really began. Calls to the 24 hour line, messages left, calls not returned, one ridiculous answer after another from fellows, interns, doctors, and nurses who had no idea who we were and clearly did not understand how to treat diabetes in a 1 year old child. Promises were made, promises were broken and there was absolutely no follow-up by anyone at Children's Hospital. Life Specialist? Nope, never cared enough to call.
We attended Diabetes 101 and then requested the Take Charge class. We wanted to learn, be self-sufficient and do the very best for our son. When I called to schedule that class they said there was only room for 1 so my husband would not be able to attend. I attended this class by myself, feeling frightened, sad, overwhelmed and very disappointed that my husband, my partner, Nate's father was not there to learn these life saving skills with me.
There are never appointments available, we were forced to book 4 months or more out. Nate hated coming to the appointments. He never felt comfortable there because we never saw the same person more than once. How can we build a good rapport with anyone there when we only see them one time? Children need to be comfortable in their surroundings and feel trust and comfort from their medical team. That never happened.
We continually asked to at least be able to work with one CDE but were always turned down. There was no consistency between all of the different educators. One would tell us to do one thing and another would say the opposite. The system is broken!! It does not work. Nate is not a number, bar code or a case number! He is a little boy with diabetes that never received the help he needed from one of the leading children's hospital in the country area (although ranked #30 out of 30 for their Diabetes and Endocrine Disorders hospital). We have been sad, frustrated and angry and now we are leaving. My concern now is for the other parents who will be devastated with a T1 diagnosis and feel not only the overwhelming emotions of the diagnosis but also the complete frustration with the CMC system.
I do not want there to be confusion about my frustrations - - - there are some very lovely people in the endocrinology department. The frustration is that we never get to work with the same person. I am very grateful for the help we received getting Nate on the pump. I just wish it had not seemed like such an uphill battle once we made the pump choice that we did.
The billing system and department is a nightmare. We have been billed for things we should not have been billed for, we have bills for classes that our insurance will not pay and the overall confusion over what is an actual appointment versus a training class is RIDICULOUS. There is NO way we would have attended pump start if I had known it was going to be billed as a training class -- I am pretty sure I could have slapped that pod on Nate's bum without driving 30 miles and being billed $300 for a training class. Pump follow-up - - - again, I would not have driven 30 miles downtown with Nate to have him poked and prodded, his A1c tested, & blood pressure taken if I had know that that too would be billed as a training class. That is another $500 that our insurance will not pay because they only cover 3 training classes per year. Jim and I know what our insurance covers. We found out the hard way last year. If I had known that these appointments were actually classes - - - we would NOT have been there. Now, we owe CMC a ridiculous amount of money and if I have to decide between life-saving insulin for my son or paying for ridiculous charges from CMC -- the choice is pretty obvious isn't it?
The final thing that I would like to mention is that in the short time that we have been working with another practice, Nate's A1c has already gone down considerably. Whenever I had concerns about Nate's high bg levels I was told that A)highs were not as important as lows and someone would call me when they got a chance and B) at his young age an A1c of 8-9 is acceptable. How could I not be frustrated with this system? As I mentioned earlier, Nate will have diabetes his ENTIRE life. I find it hard to think about the complication he may have to endure because of high bg. Even at his young age it is so important to keep this terrible disease under tight control to avoid future complications.
Nate is my son and he has type 1 diabetes. Although I do not want type 1 to define him it is certainly a very large part of his life. I have hopes and dreams for my son as all mothers do. It breaks my heart to think about him not being able to live a long, happy life --- marriage, children, working hard, fulfilling all of his dreams. He deserves the very best and I will work hard my entire life to make sure he gets the very best treatment. Who knows what his future holds . . . he may be the one that finds the long sought after cure for diabetes. So, yes I am taking my son out of the mess that is the Children's Medical Center and giving him a better future and more control over his diabetes.