So, I took your advice and started to seriously look into a new paed. He must have felt the negative vibes because after one last desperate phone call on the Thursday, our paed phoned back.
Now, how many times do I have to tell you, don’t pass out!
I think I must have sounded a tad cranky because he sounded very ‘hang dog’ and mumbled something about having let alot of people down this week. I even felt a bit sorry for him…just a bit, ok?
I told him that Ivy was in pain and that we needed to do something for her.
He said he needed to make a few calls and he would call back. ( No breath holding, I promise).
Just as I was running, escaping, walking out the door for my first outing in over six months scrapbooking class he called back.
And we have a plan.
Again.
A new and shiny plan.
And the skies did rain down with perfumed rose petals as I spun in slow motion with glee!
1.Up the prednisone again (roid rage, here we come) for ten days.
2. Reduce the dose and add in an immune supressant. (That’s the new part).
3. Pray really hard, to whatever higher power you refer to.
Tests have been sent away to Sydney and more are going to be done.
It’s almost 1:30 am and there is SO much more to tell you but I need to sleep before my eyelids need matchsticks to keep them open.
The paed will live to see another day…
Part Two…
… and after a few jokes and a bit of bantering about how hard our prospective lives were, things became alot less…chilly.
We talked about the girl’s bowel issues and where to go from there.
He told me Ivy needed to be scoped.
That’s a big step, in anyone’s world.
He told me that we needed to ring the gastro doc’s rooms and warned me that the receptionist was a nazi (irony for breakfast, anyone???) and would schedule us in for MAY.
Before you faint again, like I almost did, read on. M’kay?
The paed went on to explain that the gastro doc would then bring us forward and Ivy would be scoped in three weeks time.
Time to get used to the idea.
Time to prepare, right?
Wrong.
We get promises of more scripts and close contact via phone, (I can hear you all scoffing, stop it) and the paed rings off and I am happier and more confident in what I am doing with the girl, than I have been in weeks.
The next day we have tasks to do but before David has a chance to call the gastro doc, he calls me… and says Ivy will be scoped next Thursday!!!
Both ends.
Poor Baby.
In Sydney,
Randwick to be precise.
At 8:30 am.
Yep.
You read it right.
8:30!
We live in the Hunter Valley, about two hours from the outskirts of Sydney.
Randwick is on the other side.
At 8:30.
Through peak hour.
Through the city… and out the other end.
Oh. My. Goodness.
Now I really do have to breathe at this point, big gulping, moving very fast, I hate driving through the city, breaths.
And then comes the kicker.
It will cost $260 up front to just see this guy!
Not only is it painful to watch your baby go through this ‘up the bum’ procedure, the parents have to pay through the arse (pun intended) to do so.
So that’s it.
Next Thursday.
After months of disgusting diahrroea and painful Pemphigus things are finally moving… fast.
I could go on about all the things I am worried about but then what would I post about for the next week? (Kidding people, kidding. I have to get my jollies somewhere).
Actually, maybe I’m not kidding…
Posted on February 2nd, 2008 by Tiff
Filed under: Health, illness, doctor related posts, worry














Poor little pet. BUT! Hopefully they will find something in her gut so they can fix it!
And yes, I did nearly faint when you were telling me not to. Sorry bout that.
Can you stay the night in Randwick? umm maybe sleep in a stable or something..And ’scoped? is that the tube camera thingy??? Both ends!!! Poor Darlin.. (You as well)
At least the paed is doing something..
(((HUGS))) thinking of you xxx Kim
I hope it at least gives you some answers. (((HUGS)))
Oh ,Tiff - some good news at last -of sorts anyway.
At least the Paed is taking some action. I will be thinking of Ivy & you and keeping you in my thoughts and prayers all week. {hugs}
I still want to poke your paed with a sharp pointy stick………..
I hope the tests get you some answers and a solution hon
We will be going through this eventually with Boo. So I understand your apprehension.
Is there anywhere you could stay the night before? In Vic there is a patient transport scheme where you can get reimbursed for your petrol costs and parking fees. Ask the Doc if that is available. At least it will alleviate some of the financial stress.
Thursday is so very close. On the up side the sooner the better from all points of view. With luck we will all soon see a happy healthy Ivy.
Since you are heading to Sydney, you might as well contact the authority. I am thrilled for you, just what you needed-forward motion!!!
Prof Murrell is Head of Dermatology, St George Hospital, University of New South Wales, Kogarah, Sydney. She is also consultant dermatologist for Epidermolysis Bullosa (EB) at Sydney Children’s Hospital.
Australian Blistering Diseases Foundation
Department of Dermatology
St George Hospital
Kogarah Sydney NSW 2217
Ph: 02 9113 2088
Fax: 02 9113 2886
info@blisters.org.au
EXCELLENT!
I’m so pleased to read that &*%^$ paed pulled his proverbial finger out at long last. And they’re sure to let you into recovery with Ivy. It’s usually “twilight” sedation used in ’scopes and she’ll still be groggy and grumpy BUT you’re on the path to hopefully getting some answers
Find a cheapie motel to stay at overnight, less stress for you and Ivy on the morning of the op.
http://www.totaltravel.com.au/travel/nsw/sydneyarea/directory/motels
((hugs))