Autistic/epileptic cousin undergoing hysterectomy - need advice

[Climbergirl]

**x-posted**

Ok, so my 18 year old cousin (who is a fairly mid to low functioning autistic girl) is having a hysterectomy next week. This has been an ongoing thing that the doctor thinks will improve her epilepsy, which has been getting worse and worse (she is having grand mal seizures pretty regularly). My mom and her dad will be taking care of her as her mom (my aunt) has just been diagnosed with stage 4 metastatic melanoma and will be having extensive tests next week to figure out what to do for her.

I am not sure I agree with the hysterectomy thing, but that is the decision her parents have made, so I am just trying to get info to help with recovery.

My mom wants to know what things to do to help her deal with the surgery and to help her deal with being in the hospital. I don't know if the surgery is going to be laproscopic or an abdominal incision similar to a c-section (I really hope not in her case since she is very sensitive).

Does anyone have any suggestions? I tried finding a pdf I found at one point on helping to recover from a c-section, but I am not finding much.

Thanks!

[PinkinPA]

I don't know about a hysterectomy but I just watched a documentary about healing cancer. It is called "A Beautiful Truth"

I was really touched by it, having several losses from cancer one being fairly recent.

Check this link: http://www.gerson.org/

I'll keep your family in my thoughts and prayers.

[blessedwithboys]

i've heard that a hysterectomy can be done transvaginally. if not, and if its not done laparoscopically, but more like a csec, i would just say the caregivers should ask for as much pain meds as is safe so that she will be able to rest comfortably for the first week or so.

i didnt take anything for pain after my 2 csecs, and though i healed quickly, it sure hurt like hell and i cant imagine how scary that could be for a person who may have limited communication ability, esp if she may be prone to rage.

if they are taking the ovaries as well as uterus, are the parents prepared to face early menopause? my exdh's g'mother had reproductive cancer and so a hysterectomy at age 20 or so and began menopause shortly thereafter.

[Climbergirl]

Yes, it is definitely an abdominal surgery. I need to look at some of my ICAN stuff to see if I can find some things for my mom.

I told my aunt to make sure that the doctor puts in his orders that she have a private room. That way, someone can spend the night with her. My aunt did mention something about a medication pump (and that someone would need to be there to work it for my cousin), so I think they are definitely going to have pain meds.

I am going to tell my mom she needs to be walking as soon as possible. And that to make sure she knows this is major surgery and that my cousin will be in a lot of pain. I did find out they are using glue so she does not have to go back in and be put out to remove the stitches.

I know they are taking her uterus. I am not sure about her ovaries. It is a little hard to ask too many questions (and my mom is not one for doing that) since they are going through so much right now. So, I don't know about the menopause thing.

I am so tired.....

[blessedwithboys]

i would imagine that if its abdominal they are probably taking everything out. so hard for an 18yo girl to have to go through...i think its awesome that you're trying to do what you can.

another thing i remember from my 2nd csec when i was under general (1st was epidural)...if she can handle hard candies, they were great for helping me avoid coughing bc the tube made my throat itchy which made me cough to scratch it which made me feel like my guts were gonna spill out. so hard candies and pillow for her to hold against her tummy when and if she cant avoid coughing.

walking ASAP is good. also, something to alleviate gas and a stool softener. anything to make her as comfy as possible.

[TCMoulton]

My sister had a C/S just over a week ago and after her surgery her incision pain was managed with a small catheter placed just inside her incision and it was attached to a ball filled with pain medication that provided continuous relief (she never had to push a button for a dose like she might have with iv pain relief). She said that it really worked wonderfully and she realy healed quickly. Maybe that would be an option for your cousin?

[StephandOwen]

I found this with lots of info on before and after surgery. Some of it may not apply to your cousin, but hopefully some will be useful!

[Climbergirl]

WOW! Thank you so much. I tried looking online, but I did not find anything as helpful as that. I will send that to my mom right now.

I really hope this goes well for everyone involved.

I will definitely mention the hard candies and what not. I am not sure if she will be going to my mom's or staying at her house for the recovery. If at my mom's, we live out in the boonies, so she will have to have everything on hand before the surgery.

I had the continuous medicine thing after my c-section. I am not really sure if they will do that because she will most likely rip it out. She get highly agitated with some of that stuff, but I will definitely mention it to my mom to ask if that is an option.

I hate this is happening. I really feel for parents of special needs children (and adults). Such hard decisions!