weight
the ENT doctors here basically told me that if we decide to seek treatment in boston that we are no longer welcome here…Â an ENT directly told me “if you decide to seek treatment in Boston, you should move to Boston’ and another doctor told be ‘if you should end up in our ER it might be hard for you to get an ENT consultation’.
it’s hard to explain the enormity of that. this disease is unpredictable. in the year and a half that we have been dealing with this we have needed to check into the ER three times. the hospital that we are in is 5 blocks down the street from us and it may no longer be there for us if we have an an emergency. so what to do? what happens if ayrie has breathig difficulty? where will we go? who will we be able to see that knows anything about RRP?
so i keep waking up wondering how much i have screwed things up.
nora, that is a huge weight and completely unreasonable for them to place on you at a time when the world is heavy… actually unreasonable for them EVER to place that weight on a mother of a patient or patient. I have a hard time believing that they will not treat you if you are in the ER. you go to the ER and let the docs who are not ENT specialists insist that he needs to be seen. You live in the US. Them refusing to see you or see you in a prompt matter. 2 little words they have in the back of their minds that they want to avoid: LAW SUIT
and i will say again. at each step in this process you are processing a lot of information (and very well, might i add). You are making the best decisions possible at each cross roads and along the way. You are not superhuman, but you are a SUPER (smart) human. I have know that you are doing a great job and navigating very difficult, ever-changing circumstances.
sending love…
Nora, you are doing the best you can, and I’m very impressed with what you are doing. You are really doing a great job. I know it may not always seem that way to you.
Say hi to Ayrie for me and Eric.
Nora – I read Pete this about the doctors and he was astounded. He said that you should contact the Hospital Administration and in that department, by law, there is a patient advocate that will stand up for the rights of the patients. You should have the doctors names and direct quotes of what they told you. It’s not against the law do get a 2nd opinion and do what is best for your child. It is unethical to have so much pride in your field that you become unwilling to attended to a mother with a sick child. (A summary of what Pete said)
Pete just called the hospital Ayrie is at here is what he found out:
So after speaking (anonymously) with the Welcome desk, I found a plan of action for Nora in case she wants to pursue this. She should understand that what she was told is mindbendingly unethical – to suggest putting someone’s child at risk by seeing them slowly if they come to the ED or denying them care is outrageous behavior. She has a right to a second opinion, and there shouldn’t be any repercussions if she asks for one.
The first step is for her to call the Welcome desk (612) 813-6000 or just 0 on the bedside phone. They will ask her a few questions and then likely put her in touch with the nursing supervisor, who despite the fact this isn’t a nursing issue. is apparently the ranking administrative person present on the weekends.
Really I think the people she wants to talk to, though, is the patient advocacy team. All hospitals are required by law to have one, and at Minneapolis Children’s this is apparently the Family Relations Liaison. They can be reached at (612) 813-7393. I think it is fine to get in touch with the welcome desk/nursing supervisor and see if they can start to address her concerns, but don’t let them dissuade her one bit from talking to the patient advocate – they are both incentivized to minimize the situation.
There is apparently a pamphlet that should be in Ayrie’s room that explains how to have concerns answered, could take a look for this as well.
Tell her to let me know if I can help at all – I feel really bad that she has to deal with this BS.
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Please let us know if we can do anything else to move along this process. Pete is really good on the phone at getting things moving. It’s one of his talents that I most appreciate.
We love you! Molly & Pete
Just read this article in the Wall Street Journal and thought of this entry in your blog. http://online.wsj.com/article/SB10001424052970204884404574363043088675838.html
My thoughts are with you and Ayrie (and of course Shiya, too).
~Lex
Way to go molly and Pete for such thorough research.