Inpatient in The Windy City

We are in Chicago, and Anna has been inpatient at The D Clinic since Monday night. Had a really great appointment with Dr. D on Monday afternoon. It couldn't have gone better--I was so happy about it. She was amazing!

Anna's going to give this a good try. The goal is to wean her off opioids so she can have ICP monitoring in Madison. Her neurosurgeon wants her to be off opioids, in order to get the most accurate results from the testing.

Also Anna is trying different IV protocols for head pain she hasn't been able to try in the past. Hoping something helps--something that she can get at home in an infusion center.

She had new MRI's yesterday. Brain, neck and spine. Haven't heard the results yet. Tilt table test this morning which was fine.

Her doctor here just called her on the phone to see how things are going this afternoon. That was really nice.

So it is expected we will be here for two weeks, as the wean is going to take a while.

Thus we are going to be Chicago gals for a while.

Very grateful to be here.

Cheryl

Good luck! I hope they figure out a plan that will work.

Will you still be there on the 18th? I'd love to drive down to the City after my appt. with Dr. W. In fact, I'll stay in the City the night of the 17th and we can do something.

Praying that all goes well!

hope the tests give you guys some answers, or status on what's going on.

good luck!
-mgb

I hope Anna gets some good results with the IV treatments. She really deserves a break from the pain.
Hugs,
Cindy

I think we will still be in Chicago on the 17th. Would love to meet you, Char.

Anna is geting IV Depakon and IV magnesium. No miracle from either.

IV Zofran has been helpful in keeping her nausea/vomiting under control.

Cheryl

She is also getting IV Clonodine. IV Benadryl was stopped because she couldn't stand the burning from it.

IV Depacon stopped because caused too much burning in her body. Trying IV Keppra today. So far, so good. Also she's getting IV Ativan and IV Norflex.

I think the really hard part is just beginning. Almost done with the wean. Her head pain is very bad.

Cheryl

Hoping for useful answers and a great outcome!

Chris

I've got my fingers crossed for both of you. I wish you all the best luck!

Mary Anne

Awful day so far. Her doctor said this would be the worst day.

I hope she is right, but I fear a bleak immediate future without pain meds.

Cheryl

So sorry for Anna. Please give her a gentle hug from her friends here! Sending prayers for an improvement.
Hugs,
Cindy

Let me just say that the trial of Inapsine this afternoon did not go well at all!

Cheryl

Poor Anna! Thoughts are with both of you as you go through this. I can only imagine how hard it is on both of you.

Her reaction to it was a doozy. I'm going to now refer to it as the devil drug because it turned her into someone who is not my daughter. Thankfully it wears off fast.

Cheryl

Interesting:

http://www.aafp.org/afp/2006/0701/p164.html

Poor sweet Anna....hoping things look up soon...

Praying for Anna..sending her love,
blessings,
wendy,erik,spencer and chad

What a trooper Anna must be, putting up with such bad pain while the docs play guinne pig on her. Sure hope they find something that works. Praying for you guys.

Hal

Nothing is helping her head pain.

A few more days to go, to get completely off opioids. They are talking about discharge on Monday. Not sure at this time if we will then be going to Madison for ICP monitoring.

Thanks everyone! Dr. D has been incredibly kind in taking this slowly. And our insurance company has been cooperating nicely.

Cheryl

Still here! I think she may get discharged on Thursday. This has turned out to be a very good experience, even though she didn't have much relief from any abortive treatment.

Dr. D...how much she has done for Anna! We just LOVE HER to pieces. We are going to miss her when we get home.

The three of us talked about what to do next. It may be going for the intrathecal pain pump. Anna was approved for a pain pump trial it, many months ago. Dr. D told us why that might be the best next step for her complicated case. Far less pain medication is used in the pump, than in taking in medication orally. And there will be a non-opioid medication in the pump as well.

Anna did so well weaning down off pain medication. I'm very proud of her.

We will actually miss being here.

Cheryl

I was very proud of her too, Cheryl. When I met her Sunday she was sweet and inquisitive. I felt I had known her forever. Of course we bonded instantly of the jewelry rack, but that's beside the point.

She was so gracious when she was feeling so poorly. A class act.

And you, Dear Cheryl. Just as I imagined, talking about everything under the sun, and so openly. With this site we don't have many secrets or barriers.

I hope you get to end your visit to our lovely city on Thursday.

Sending warmest hugs for Anna and you Cheryl

Risa