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Papa Bear


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We hear a lot about moms going all Mama Bear to protect their kids. Today I had the rare privilege of seeing my very mild mannered (think Clark Kent) dh go all Papa Bear. It's been ironic that our local health system that is excellent if you have the sniffles has been very difficult and bureaucratic when it has come to the serious issue of our dd's tumor.

 

All we want is a doctor to approve an MRI to check for other tumors in her brain. We're hoping that it will be one of those academic cross-this-possibility-off-the-list sorts of things. But there is a possibility that it isn't. And if it isn't then earlier detection is better. I've been calling doctors and hospitals in a frustrating round-robin where I feel like I've been playing telephone and no one is getting the correct message. I've had the correct forms faxed. I've jumped through one hoop after another. Finally they assigned us a resident to just examine dd (no scans) in November! At this point dh was fed up.

 

He personally went to the pediatrician's office and parked himself in front of the gate keepers who were doing their best to raise the drawbridge against him. Dh is a nurse manager in a clinic full of very ill people. He is very knowledgeable and very diplomatic. He was getting nowhere until he practically yelled at the receptionist that she would move faster if it was her little girl who had bleeding in her head (the tumor in her eye is hemorrhaging - not dangerous if it stays contained in the eye but dangerous if it is elsewhere). Interestingly earlier in the day I had gotten nowhere with the same office until I gave into tears and a touch of hysteria. Not on purpose but because the run-around has been insane.

 

Finally we got someone to listen to each of us. Dh was able to find out just what was holding things up - one form which did not fax correctly but apparently they were unable to call the doctor who sent it to ask them to send it again. We got it faxed again. Then dh came home, interviewed dd for a complete medical history, typed it up and took it back to the pediatrician. He parked himself there again until he got the nurse to go over it with him. Oh, she said, she has bleeding?:confused: What do you think the original report from the diagnosing specialist said or we've said repeatedly over the phone! :banghead:

 

Finally we got a pediatrician assigned to dd - part of the run-around has been because her primary pediatrician is on sabbatical and no one else wanted to take her as a patient. That pediatrician is finally liaisoning with the Children's hospital and getting them to listen instead of shunting us to the end of the line. (I have no trouble waiting in line for non-emergent situations but we don't know what we're dealing with here). We finally have an actual order for an MRI. I talk to radiology on Monday to find out when. I'm praying that the MRI will be that day but that was unclear. What was clear was that when we do have it done that they will give us results that same day or the next day. Then we will know if we have to continue to push for good care or if we can just breathe a huge sigh of relief.

Edited by Jean in Newcastle
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If it's any help, I know an excellent neuro-ophthalmologist in Seattle. He's difficult to get into, but works hard to squeeze in patients with urgent matters.

 

We're finally into Children's - so I think we should be good. I hope. The last few days though have taught me not to totally believe anything I've been told until I see it for myself.

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If you have to wait too long, I wonder if a trip to the ER and insisting on an MRi would work? if you try this, dh would have to be there. Of course.;)

 

At this point we want to continue to try and work within the system the way it is designed to work - even if we have to push people to get it to work correctly.

 

To take dd, who is very stressed as it is even though we've tried to shield her from as much of it as we can, and drag her to a multi-hour ER visit, would not be a good thing. Plus with our luck they would give her an aspirin and tell us to call her doctor in the morning.;)

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:grouphug: We just went through a huge work-up through Children's in Seattle, and once there, our experience was really good. They're so set up as a referral hospital that it was all seamless.

 

You know what really bothers me about your scenario? Your dh has the knowledge to push it through, and what we've seen having to do the same scenarios (we're both RNs) is that sadly, we can get listened to because we're "medical". I always wonder what happens to other parents in similarly frustrating roadblocks who don't know, since they don't work with it, where to push and how.

 

:grouphug: Hope Children's gets you just what you need and that it's a super-nothing-bad diagnosis.

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:grouphug: We just went through a huge work-up through Children's in Seattle, and once there, our experience was really good. They're so set up as a referral hospital that it was all seamless.

 

You know what really bothers me about your scenario? Your dh has the knowledge to push it through, and what we've seen having to do the same scenarios (we're both RNs) is that sadly, we can get listened to because we're "medical". I always wonder what happens to other parents in similarly frustrating roadblocks who don't know, since they don't work with it, where to push and how.

 

:grouphug: Hope Children's gets you just what you need and that it's a super-nothing-bad diagnosis.

 

I've had the exact same thought as you about other parents. Our experience with Children's has always been good in the past. The main problem this time was not Children's so much as the pediatrician's office. They were so tied up with petty bureaucracy that they were almost paralyzed.

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