I had a bad week and here's my rant-like story

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.
hhbeachgurl
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Re : I had a bad week and here's my rant-like story

Postby hhbeachgurl » Fri Mar 21, 2008 11:29 pm


Jenn, I talk to dh and he said no, she shouldn't have one and that at his former clinic they would not have performed an MRI on her. I hope that helps
. Hugs


jenn
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Re : I had a bad week and here's my rant-like story

Postby jenn » Fri Mar 21, 2008 07:12 pm

[:0] My mouth is catching flies!

Never in a million years would I have expected them to heat up!!
Tanya, Thank you so much for taking the time and sending me that link.

Ya' just never know.
Then again like SueAnn said - her mom had clips and did fine.

Also, I just got home after visiting a good friend whom is a chiropractor and he goes to MRI seminars annually and from what he told me... error on the side of caution!
There was a story where the janitor left the floor buffer in the room and when staff came in and turned on the machine - guess what?
The MRI machine had a floor buffer for lunch!
That and other stories have me saying "when pigs fly" my daughter will get an MRI. Hey that rhymes?! Works for me [;)]

The good news is that Jaidyn's life isn't on the line.
The CT would have caught anything serious and it didn't.
That I can accept.

Thanks Tanya.
Valuable info for anyone facing an MRI.

much love, Jenn

youtan
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Re : I had a bad week and here's my rant-like story

Postby youtan » Fri Mar 21, 2008 04:21 pm

Jenn I talked with some of my collegues today. Even tho' titanium isn't magnetic any metal will heat up during the MRI depending on the location of the testing and implant. I agree - better to be safe and not do it given the info or lack there of you've been provided.

Here's literature - read the intro and conclusion: http://ieeexplore.ieee.org/iel5/7931/21 ... er=1016469


jenn
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Re : I had a bad week and here's my rant-like story

Postby jenn » Fri Mar 21, 2008 03:35 pm

You guys are such a good dose of mental medicine for me - really.
Can't thank you enough.

I'm still stuck in this high stress mode. Blah!
Thank goodness for Zanax *winkitty wink*

Any information about the clips in her heart that you can share would be wonderful.
Cause here's where I stand with it thus far...
*Called the hospital where the clips were put in.
*That surgeon has retired.
*The "new" Ped surgeon at the same hospital called me back and pulled Jai's records.
*The make and model of the clips weren't available !@#$%* WHAT?!!
*He said don't risk it, do the CT
I couldn't have agreed more.

Now, I have a vague memory of being told she can't ever have an MRI way back from our NICU days, but in the same breath I believe I remember them saying they are titanium. So that contradicts itself.

What a mess huh?

This is so hard.
I want so badly to leave well enough alone.
And I do, I did for many years.
The Dr and schools seem to have a need for a diagnosis- so I played along.
Now my engines a rev'd up and we have nowhere to go.

I'm glad you guys see that I'm not wanting something wrong with my sweet pea and having a test come back okay doesn't always mean a high-five and smile, but do know we are very content that something very serious wasn't there.

So okay, before I go on anymore rants that branch off into more rants… I’m gonna’ stop myself at this.
I’m still waiting to hear back from my ped… so I’m sure I’ll have an update on that when it happens.

((Group hugs all around))
You guys are fab-tab-u-lous!
Love Jenn

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Re : I had a bad week and here's my rant-like story

Postby youtan » Fri Mar 21, 2008 11:04 am

Hugs to you! Trying to pinpoint developmental delays is such a battle - from the docs, neurologists, pschs and especially the schools. I can tell you love your daughter deeply and want so much to know more specifics so you can help your Jaidyn. Keep fighting!

You asked - now what? This is what I'd do: take time to write it all down - then try my best to spend a few hours doing something complelely unrelated. The anxiety and confusion, frustation and anger boils and you'll need a break and then re-group. The break helps me clear my mind so I'm ready to the next 'thing'.

I had two sleepless nights as we're having test after test as well for my Nathanial. (ya, never ending). Reading on other forums its amazingly unlucky that kids with disabilities don't always just end up with one diagnosis. A huge part of me still wants to hope that once they've gotten through one thing (like premature birth or major surgery- surely it exempts them from more challenges.

The reaction we get from those we share with (docs, schools, even some family) initially is that we surely must be over-reacting, highly-stressed out parents - but unfortunately our ranting behavior has been justified thus far with diagnosis after diagnosis. At some point I keep hoping that we'll have 'THE' answer so that we can move on... I wish this for your family as well!

About the MRI - I actually work in a related field. You've had great suggestions so far. Contact the MRI folks and the person who had her clips put in. You'll need to know exactly what the material is - important because this may not be the only time in her life she needs an MRI. If the material is magnetic (say, steel) then you'll need to discuss this thoroughly with the MRI experts. How is the clip attached, etc. MRI can be result in higher resolution than the CT scan - but it varies widely depending on the particular system in either case. Again a discussion with the folks involved should be able to answer this question.

Good luck Jenn. If you need someone to email or chat with - just let me know. We can cry it all out together!

hhbeachgurl
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Re : I had a bad week and here's my rant-like story

Postby hhbeachgurl » Thu Mar 20, 2008 11:59 pm

Jenn- Hugs mama

Let me ask dh tomorrow when he wakes up about the clips.... he used to run an MRI center and will know some more about the risks....I'll let you know what he says.

It's so frusterating not to have answeres isn't it. I am like you, I have to know why....drives me crazy when I don't.....and it's worse when it is our ids that we can't get an explanation on. Hugs

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Re : I had a bad week and here's my rant-like story

Postby rosemary » Thu Mar 20, 2008 11:12 pm

Jenn...your words just echoed in my head --- my sister is going through something so similar with her 6 year old son. You are so right in just not accepting that some thing just 'are'. My sister has been told the same thing, and she refused to back down. She too has been through the wringer trying to get to the bottom of her son's issues, and it's just been so draining for her. Like you, she just wants the best for her child and for him to have what he needs (whatever that might be). I am so sorry for what you are going through and I hope that you start to find some answers. Jai is so blessed to have you for a Mom!! Hang in there - you're in my thoughts.

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Re : I had a bad week and here's my rant-like story

Postby kara » Thu Mar 20, 2008 10:54 pm

Jenn,
Rant on. Can you talk to a radiologist about the risks with the PDA clips? I've heard that once things like pins/clips etc have been in place for a long time (12 months or more), and are not in a fragile area (like the eye) that the MRI's are safe enough. I'd at least ask the questions, and let the MRI pros give you their thoughts/experiences. Maybe they do MRI's all the time with these PDA clips in place. The decision might be easier.

Sending you lots of hugs!

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Re : I had a bad week and here's my rant-like story

Postby mnmom » Thu Mar 20, 2008 08:25 pm

Jenn-
Thinking of you.

season
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Re : I had a bad week and here's my rant-like story

Postby season » Thu Mar 20, 2008 03:31 pm

Jenn,

I'm glad you are able to come here and vent. It just goes on and on, doesn't it? Jai is fortunate to have you as her mama, as youa re stubborn enough ot keep looking for answers.

Isn't it crazy to feel dissapointed when thay say that a test showed nothing wrong. You want to be releived but you are therefore no closer to an answer. So your happy and your sad and altogether quite confused!!! I hope the ped helps you figure out what next step makes the most sense.


FYI - if the pda clip is made of the same material as clips used in the brain, I don't think an MRI will be a problem. My mom had an anuerism hemorrage and thus had it clipped. They then did an MRI to look for other possible aneurisms, so the first clip was not a problem for MRIs. It's worth asking about, not all metals are magnetic. Afian, though I'm not a doctor I'm jsut specualting absed on what my mom went through. (Side note - part of why PIH and pre-eecalmspia is so scary for me personally is knowing I have a family hsitory of brain bleeds and that high bp is one of the stressors that leads to them - nice huh?)

Back to you, I wish I was closer so I could just hang out with you and let you just vent all your frustrations away.


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