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#1 of 15 Old 04-20-2007, 12:45 AM - Thread Starter
 
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I need your advice... will you read my last four or so updates on Linden here... Linden's page
and give me your opinion on how this happened, how negligent was it, how common it is, and what I should do?
I'm LIVID. I just don't know where to go from here and what to do that will make an impact. I'm not the suing type, so I'm not just going to sue. But how does one address something like this and to whom?
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#2 of 15 Old 04-20-2007, 12:48 AM
 
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All I can offer is hugs. This is in no way your fault

familybed1.gifnovaxnocirc.gif nut.gifMommy to my amazing 6 yr old dd, we homeschool.gif, and  27 weeks belly.gifpuke.gifand have been sick the whole time so far, grrrrr!!!!!!!

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#3 of 15 Old 04-20-2007, 01:00 AM
 
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I'm really sorry this happened. I don't know that I can answer your questions, but I will tell you this.

And this is really hard for me to say because I've learned the hard way what I'm about to tell you.



In order to get the best care for your son...you have to stop thinking things like "arguably the best Children's Hospital in the country."

Assume that everyone you meet is incompetent until they prove otherwise.

Check, double check, and triple check everything against each other, against common sense, against other parents' notes.

Take NOTHING for granted.

Don't talk about suing or not suing. Figure out what needs to be done. Period.

Act don't react.


I am really really sorry this happened to you and to your son.
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#4 of 15 Old 04-20-2007, 03:02 AM
 
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Quote:
Originally Posted by mamaverdi View Post
I'm really sorry this happened. I don't know that I can answer your questions, but I will tell you this.

And this is really hard for me to say because I've learned the hard way what I'm about to tell you.



In order to get the best care for your son...you have to stop thinking things like "arguably the best Children's Hospital in the country."

Assume that everyone you meet is incompetent until they prove otherwise.

Check, double check, and triple check everything against each other, against common sense, against other parents' notes.

Take NOTHING for granted.

Don't talk about suing or not suing. Figure out what needs to be done. Period.

Act don't react.


I am really really sorry this happened to you and to your son.


This is so true. My son gets his care at Stanford and even though that place is in the top 10 hospitals in the country, I still do not place all my trust in them. They are humans no matter what kind of prestigous hospitals they work at and they are prone to error. I have seen a few too many major and minor screw ups at the children's hospital to know this as a basic fact when working with medical doctors in cooperation with my child's care. Question everything. I had to learn this myself as well. I don't know how you would go about documenting it, but perhaps you can have a meeting with the two doctors or even his whole care team. Do you have a social worker working with your family? Most hospitals assign one. You could speak to him/her about who you can document this will.

Consider yourself a vital member of his care team - you are his mother no matter what the condition is, you know *him* the best.

I feel like it's appalling that they messed up like this for so long.

My heart hurts for your little boy. I'm so sorry he had to go through that.
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#5 of 15 Old 04-20-2007, 10:43 AM
 
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Oh, dear, that's terrible! I'm not a medical person, but wanted to comment that when we started tube feeds ds was getting 75 ml every 3 hours, and they said it would be enough if he could tolerate it. Of course, he was probably puking up half of it, so we did end up having to fortify.

I noticed you were having trouble getting the human milk fortifier. FWIW, they never even suggested that for ds; we were just using formula powder to fortify.

I hope you can find a way to get this all resolved.
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#6 of 15 Old 04-20-2007, 01:28 PM
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Oh I am so sorry.

I am not a medical person. But my dad has several serious health issues (liver transplant, etc) and my mom is a nurse. When they were unhappy with the care dad received at a teaching hospital last spring, mom discussed it with dad's main doctor. That doctor urged her to write the head of the department. She wrote a detailed and thoughtful letter. The cardiologist responsible for overseeing the care they were unhappy with did call her and discuss it and apologize.

So you might consider that as one route.
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#7 of 15 Old 04-20-2007, 02:11 PM
 
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You know I also forgot, you could contact the patient advocate if most of this care etc was given AT hospital.
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#8 of 15 Old 04-20-2007, 02:29 PM
 
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Just saw this. Reading your journal now.....
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#9 of 15 Old 04-20-2007, 02:49 PM
 
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on second thought...I'll pm you.
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#10 of 15 Old 04-20-2007, 08:39 PM
 
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I talked with my dh about this, and we had another thought.

You need your dh with you speaking to patient relations. And HE needs to be angrier than you are.
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#11 of 15 Old 04-20-2007, 08:46 PM
 
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Quote:
Originally Posted by mamaverdi View Post
I talked with my dh about this, and we had another thought.

You need your dh with you speaking to patient relations. And HE needs to be angrier than you are.
Oh yes. This is gooooooooooood advice. Angry dad in front of patient relations will have them scrambling. Yes yes yes.
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#12 of 15 Old 04-20-2007, 09:16 PM
 
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I'm so sorry that happened to you!! And to Linden. How many calories did they tell you to give him per day before, and how many is he supposed to be getting? I am so glad that he's getting the required calories now and is starting to cheer up. Nitara also had the limp, empty fat folds when she first got her tube, but it was because she was starving herself, not because of doctor orders. That would make me sooo mad.

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#13 of 15 Old 04-21-2007, 11:35 PM
 
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MW how are YOU doing?
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#14 of 15 Old 04-22-2007, 12:42 PM - Thread Starter
 
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I'm doing okay. Linden's so much happier and almost back to his old self (albeit more than a month delayed). And seeing him happy and comfortable makes me so much happier. Plus i've come up with a game plan, what I want to see from the hospital, and what I need them to do. It's on linden's page (the link in the OP if you want to see it). So now that I have something to aim for, I feel better.
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#15 of 15 Old 04-22-2007, 01:05 PM
 
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I will cautiously say to you that you may want to talk to a lawyer before starting with this. I've been in your position and even though I just wanted an apology and reconciliation, what I got was a cover-up, denial, and refusal to treat, change, or acknowledge. I continue to *hope* that it is different somewhere else. But I'm also a realist.

There is a big difference b/w a diagnostic error and a medication/calculation error...which the latter is what you have here.

I've been at some of the "best" children's hospitals in the country. All I have to say is that ratings are HIGHLY overrated.

I wish you luck. Please let me know if there is anything I can do.
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