Beth,
You can always call to postpone the surgery. If you do that, I would strongly suggest taking Chartreux's suggestion & contacting the pain psychologist the same day for an appointment ASAP. S/he can help you sort through your fears & concerns as well as help advocate for you if you're not ready for another implant yet. The psych can also help prepare you for a more successful experience if you decide eventually to go through with the implant. Also, your PCP might not be aware of how traumatizing it is for you to have to face what you perceive (& perhaps rightly so) to be the same situation. Maybe your husband could better explain to her how the thought of surgery is affecting you & see what she thinks.
If you decide to go through with the implant on Monday, maybe you could make sure to set up a "Plan B" with your doc before he starts the procedure. Go through what happened the last time & ask him how it should be handled if it somehow happens again (though I agree that your case sounded really severe, so maybe it was some kind of surgical error or pump malfunction). I don't get why your previous doc waited so long to address your symptoms. I remember once when I was on baclofen I couldn't urinate for 3 days. My PCP asked me why I waited 3 days see her. She said that is considered a medical emergency b/c, among other things, you can die from the toxins that build up in your body. I definitely think waiting until you put on 75 lbs of water weight sounds like too long & if that starts to happen again you should probably get a second opinion right away about
whether it's really safe to wait. For what it's worth, here's the questions I would ask pre-op:
1. What medications will the pump give me? How much?
2. How are those different from what I had before?
3. What will the PM be doing to monitor my response? (I'd demand a follow-up appointment the same week just to discuss your progress. At a minimum, he ought to agree to call/email you.)
4. What will be done if I have a severe reaction to the pump or pump medications? Who will handle that situation (PM, his partners, PCP, ER doc, etc.) & how can they be contacted if a situation arises outside of normal office hours?
5. What can he do to prevent/manage withdrawal symptoms if the pump medications need to be discontinued?
6. What other options are available if the pump trial is not successful? Will he continue to manage my care?
Call his office first thing Monday morning to let them know you need to talk to your PM before the procedure, or if they're not
open before you leave for surgery, let the hospital know when you check in that you need to talk to your doctor before the surgery & that you REFUSE to have the procedure unless he can spend a couple minutes addressing some concerns you have (usually that gets their attention).
I know it's crazy scary to think about
trusting someone with your health. I honestly don't know that I would handle it as well as you are. You've been quite brave up to this point -- handling all sorts of unimaginable situations with incredible strength -- & your daughter is quite fortunate to have such a tireless advocate in her corner. Just focus on getting better for her & take all the help you can get from your husband, your doctor or anyone else. Remember that you know more now than you did before & can make sure things are handled better & quicker than they were before.
And know that a lot of people here will be thinking of you & praying for you this weekend & Monday, and if you have any questions or worries there are people here almost 24/7 whenever you need to talk.
Take care & best wishes for your decision!
peace,
frances
PS -- There are several support groups for parents of autistic children in the Houston area. Maybe you can find some people there who are more understanding plus they might know of some resources to help you with your daughter while you take some time to take care of yourself. I have enormous respect for parents of autistic children. They are some of the wisest, most patient, selfless & passionate advocates for their children I have ever met. I used to work a part-time job working on language development with Autistic & PDD children -- they have truly beautiful souls & I hope with all my heart that one day we will find a way to "unlock" their language b/c I'm sure we all would learn a lot from what they have to say. Keep hanging in there & know that you never need walk alone through your struggles.