Friday, April 06, 2007

Can I be ornery yet?

You would think people would let you off of work if you couldn't hold any reasonable conversation with out raising your voice, my husband even lets me off the hook at that point.

I am either pregnant or PMSie (it is not worth wasting $10 just to find out when natural will probably show you for free in a few more days) along with riding the emotional rollercoaster of that which has been so blazen as to call it's self a week.

I am tired, and want to throw in the towel, and yet I press on (only after a good nap though). Why? because I recognize that the only towels I should be throwing in are the dirty ones, in to the wash machine.

So now that I got that off of me, it is time to back track and tell you what happened with Ian since I last blogged.

We stuck around on Thursday, waiting for our appointment with Dr Raffle. But on Wensday night all my research pointed me in the direction of making sure Ian's bowels were clear, so the first useful thing I did Thursday was to call his GI doc's secretary and and ask for maintenance meds to keep him pooping. It's just a powdered stool softener that you mix with water or juice twice a day.

No problem they had a prescription for us and we were able to get that filled while we were waiting for the appointed time with Dr Raffle. We checked in 1 hour early to the appointment desk, and find out they canceled our appointment, but we were welcome to reschedule for 4:30. Of course by this time we had checked out of our hotel and were just dying for heading home, but after a lot of internal arguments we decided to stay and get those questions answered.

So at 3:00 they called us in, and we sat down with Dr Raffle and his temp nurse because the one who normally works with him and does all the scheduling is on vacation this week. and we began to ask our questions.

The answers were a lot shorter then we thought they would be, and of course in the end we only ended up with more questions. But here is the rundown of the questions and what we learned.

1. You mentioned that there was fluid in the spinal cord. What is the significance of this, what does it mean for function?
A: There is no discernible significance to this that we are aware of, it is normal to see some of that with the internal mencocloial.

2. IS there anything you do to fix that?
A: no

3. How are you going to fix the fluid sack?
A: We are going to take the excess skin of the sack and sew up the hole where the sack came out. I would also like to go in from the back and see if we can untether the cord.

4: You mentioned something about tightening up the glut and rectal sphincter muscles...can you give me more information on that?
A: You would have to talk to Dr. Moir on that.

5: What is the expected procedure? When are we looking at it? Are you going to use any special anastegia?
A: We consider this an elective procedure. There is no rush to have it done. Follow up will be in a few weeks and then a few months. Hospital stay about 4-5 days. The only difference in anastegia is that it won't be given with the muscle relaxant.

6: Now, I have a child with autism, which as we know is considered a neurological disease but is behaviorally diagnosed. What possibility what it be that he might have something like what are seeing with Ian?
A: I don't know much about autism, but there has been no connection made between the two.

Then we discussed the diagnosis of Dr Hussman and he said all those questions have to go back to Dr Hussman.

He also mentioned in there somewhere that they are not even sure he has nerves to the bladder and rectum, but that when he is in surgery they will find out because then he will see or not see them.

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