Today is Edwards MRI scan

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Lizbet22's picture
Joined: 04/01/09
Posts: 2859
Today is Edwards MRI scan

So today we have the MRI to see if Ed is in the small minority of those who have sturge weber syndrome.
We will attempt feed and wrap but if it doesn't work the will sedate him.
I am so nervous. Not for the MRI but for the dye they apparently need to inject and the cannula and potentially the general..
I know I am going to be a mess.
We will only be contacted by phone on the results if there is a problem.
So if we don't hear anything all week I guess it means he's not got it.
We will still need to see the eye doctor regularly though as these birth marks can still put pressure on the eye.
Anyhow!
Thoughts and prayers please.
We need as many as possible
Xxxxxx

Minx_Kristi's picture
Joined: 01/02/09
Posts: 1261

Liz, what's this all about?

How did you get on?

xx

Lizbet22's picture
Joined: 04/01/09
Posts: 2859

Appointments not til 1430 but have to be on ward for 1330 to feed and wrap.
His port wine stain can be a symptom of sturge weber syndrome. It's only a small chance but it needs to be ruled out.
We are not looking forward to it, the MRI itself I have no problem with its the dye injection and potential general if he doesn't stay still enough.
Scary xxxx

Minx_Kristi's picture
Joined: 01/02/09
Posts: 1261

Aww no, poor Ed (and mummy and daddy) *hugs*

I know how you feel because when LC was not even a week old, she had to be taken in for tests because of the fits she was having. I was sooooooo mad at the Drs because they kept botching up when trying to get a vein in her hand and she was screaming her head off. Andrew walked out... I think he was ready to thump someone! She ended up with bruised hands for almost two weeks, grrrrrr!

I'm sure your appt will go a lot better as he's getting such a big boy now. Let us know how you get on, thinking of ya.

xx

Lizbet22's picture
Joined: 04/01/09
Posts: 2859

Wasn't so good.
Have had to reschedule.
They just couldn't get a vein..or rather they could get a vein but couldn't get something called flashback so it meant the needle wasn't in properly.
Little tyke was screaming.
They tried 6 different veins with 3 different people doing it.
He was screaming I was bawling.
Not fun!!
So have to do it all over in a months time or so.
and to top of a fabulous day...NOT...some nasty little thieving scum nicked my mobile!!!!
Shouldn't have left it on the arm of the chair..but still...GRRR
xxx

blissfulliss's picture
Joined: 03/03/09
Posts: 337

Liz, oh my gosh! I am so sorry for your terrible experience! It sounds traumatic.. Sad
Know that I'll be praying for a better appointment, good results and peace for all of you!!!
:bigarmhug:

tanismom's picture
Joined: 11/07/06
Posts: 717

how awful!!!! Odeliya dehydrated at 8 weeks, it was her first time in hospital, middle of the night, blah blah blah - her veins were collapsed and they kept poking her and poking her - it was horrible!! and then finally the head dr of peds came in and in 2 seconds got a line in on the back of her hand - some people just have the magic touch!

Nell4Him's picture
Joined: 10/25/06
Posts: 2455

So when is the new appointment? or do you know?

Lizbet22's picture
Joined: 04/01/09
Posts: 2859

Just waiting on the appointment date.be about3weeks now I reckonxxx

Minx_Kristi's picture
Joined: 01/02/09
Posts: 1261

I must've missed your reply on facebook! That's exactly how it went down with LC, horrible. I hope he has a better time of it at the next appt.

xx

Joined: 07/26/04
Posts: 1595

*Lurker*
Oh Liz, poor baby and momma!!! So sorry! :bighug: