ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: marymomof3 on February 14, 2008, 06:21:42 pm
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Hi all! Let me tell you that since I've been diagnosed with AN this has been my full time job. I just decided to stay home since I had my third, and now this became my job! ha ha ha! At least I still have my sense of humor. So I'm generally certain that after my research I will have go the surgical route, but it's tough to actually make the call and schedule. I also haven't discussed this with anyone other than my husband and my parents. I need to get comfortable with discussing this. Someone else recently posted this same concern. I have so many commitments that I know I have to inform people.
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I think that it is great you have decided on a treatment for yourself. It is a full time job learning about all of this and can be so overwhelming to say the least. If you need a sounding board while trying to figure out what and when to tell everyone just let us know and we all will be happy to help you out. Kisses to your forehead. :-* 16
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Hi Mary. I know what you mean - I have 4 kids and we are pretty new to Nashville, so we don't have any family in the area. The scheduling was the hardest part. Making sure everyone is where they need to be without me here to play air traffic controller. It all seems to come together in the end. Thank God for post-it notes, which were left all over the house with directions for everything!
I hope your scheduling goes as well so you'll have a few less things to worry about. You should only have to worry about YOU for a little while!
Good luck to you! Your kids should have you back on your feet in no time - whether you want to be or not! :D
Lori
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Mary~
I have 3 precious girlies and "stay home" even though I am not home much!! I would love to talk to you about life w/ kids and AN if you would like -- please feel free tp contact me!
Good Luck w/ all your research and dealing with this on your own time scale!
K
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Mary -
researching and decision making are definitely very time consuming and difficult processes - it's impressive that you've kept your sense of humor :)
As another mom who's had AN surgery, I totally agree with Lori's comment on scheduling.
Although my children aren't "little" (going to be 12 on Leap Day!) it was extremely important to me to keep things as normal as possible for them while I was in the hospital and at home recovering from my surgery. As a single parent (my twins have 0% involvement with their father), I stressed a lot about how things were going to work out.
About a week before my "big day" I sat down and made numerous lists for my "caregivers" (my mom and my sister) who literally moved into my house and took care of everything I either wasn't there to do myself - or simply couldn't do for a while post op. My lists included things like a calendar of each child's schedule; details of their normal routines; maps/directions to unfamiliar places; important phone numbers - including neighbors; what day the trash went out; where I store the extra cat food; etc. Basically anything and everything that would make life less stressful for my children and keep my household running smoothly. My mom and sister really appreciated the lists because they had a handy reference guide and the lists also helped ease my mind and let me concentrate on my recovery.
Don't hesitate to ask friends and family for help and delegate specific tasks to them if you can. The morning of my surgery I gave my dad my cell phone and a list of people to call once I was sent to recover in the ICU. He was thankful he could do something productive for me and it was one less thing I had to do once I felt up to it. You'll need extra help for a while (I was surprised how fatigued I was post op) and you'll find most people are more than willing to do what's needed. Try to get a good support system in order prior to your surgery, it will make things easier for you, your children, and your husband during your recovery.
Best of luck,
Jan
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Hi ladies.... also a Mom of 3... two girlies and a little 2yo terror boy! lol, he is really a sweatheart.... Just thought I would say hello and I think that is is AWSOME that you have made a decision. Would love to hear a few tips about Mothering with a AN. I can really tell that it affects things here with the noise level, even the loud laughter which is so hard on me and sad when I lose it ocassionally. Have you shared any of the info with the kids? I have not with my 8 year old but my 13 year old I try to include in most all........... I had ck btw as the recovery time was a issue for me. Noone to take care of the kiddos but me on a daily basis..... :(
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Good Morning!
My hat is off to you all.
Jan~ You must be WonderWoman to do all that w/ twins and by yourself. I don't even know you & I think you are the BEST!! My hubby does so much for me & still picks up a LOT of slack that most men don't/won't do.
Cyndi~ What a trooper -- we need to find you some help!
I was "fortunate" enough to not have kids WHEN I had surgery -- I just got pregnant too soon (in my opinion) AFTER I had surgery. I have always said that I was glad I didn't have kiddos yet (even though I was dying for babies of my own!) since I had to have someone care for me 24/7 for a LONG time -- my recovery was MUCH different since I had a stroke too. I would definitely think that the scheduling would be the key. I have had several operations/procedures since I have had kids (NOTHING like the AN surgery!) and that is the most important. The more detailed you are for the caretaker BEFORE, the easier it will be for them.
Maybe we should start a MOMS GROUP, anyone interested?
Have a great weekend!
K
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Mary ...... me, yourself and Elderbirds can ALL hold hands and go through this together ..... we all have young children so our experiences are a lot the same. contact me if you want ..... I made the 'decision' last week to have microsurgery as well - and I am awaiting 'the call' - I have no idea when it will come - bu probably within the next couple of months ..... YIKS!
If you want my MSN is listed in my profile - if you ever want 'real-time' chat.
CUDO'S to you for making this hard, well thought out decision! It is a different kind of anxiety now ....... but I do feel a sense of relief as well ......
((((HUGS))))!
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My sons were 4.5 and 1.5 yrs when I had my surgery (the little one turns 3 next week, and my older one will be 6 this spring), and I was a full-time mom.
The lists are exactly what you need. My mom moved in with us, starting about 4 days before the surgery so the kids could start getting used to her. I gave her lists of potential playdates, directions to parks, favorite foods, schedules, and anything else I could think of! And a very amazing group of friends provided dinner for my family every other night for almost 6 weeks - that was the best thing ever!!
And while I know my recovery was pretty quick, I was taking care of the kids on my own during the day at 4 weeks post-op (not by choice, but that's a long and sad story). I could do it, but I'd collapse into bed as soon as my husband got home.
If there's any way I can help or offer suggestions, please let me know. Post-op, the AN hasn't really affected my interactions with the kids (though they know they have to look at me and not mumble when they speak to me). Sometimes I have to tell them to lower the volume, but I think that's true for any mother - especially a mom of boys! ;)
Katie
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Hi all,
Thought I'd chime in too, I also have 2 boys at home (6 & 9). I too have decided on surgery and am awaiting "the call" for the date. I am trying to get thing, s in order, and hopefully have surgery before little league season is in full swing. I work full-time outside the home. So I have only told those that do the scheduling at work, my husband and our parents. I will tell others when the time gets closer, and only those that "need to know". I am thankful that my parents and mother-in-law live locally and are all retired and are willing and able to do what ever we need. I'm a little nervous being away from the boys for that long but I know they will be fine. I will tell them right before surgery, they've seen my husband recover from knee surgery, but it will be much different with mommy sitting on the couch all day! they notice every bandaid on me, so I'm not sure what they'll think. they know I have a problem with my hearing and that I've been going to the doctor to see if they can fix it. Did anyone have their kids visit them at the hospital? I really don't think I want ANY visitors, let alone the kids, but we'll see how things go. Glad to know I'm not alone .
Hope
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Definatly interested in a Moms group........ you ladies all sound amazing. We just do what we have to do I guess and find some sort of inner strength as we go along ;) Gl to you ladies waiting on the call for the surgeries. I was way too chicken.
My oldest is 13, girl and then I have a 8 year old gril and a 2yo boy........... Glad to hear I am the only one who has to remind the kids to look at me and speak clearly! I dont have any recordable hearing loss, they called it miniscule at my last audiogram but the ringing is just so loud and I swear she mumbles! lol............ The volume of it all, I just have to close my eyes, cover my ears and get them to stop whatever it is they are doing. I hate when they all try and talk at once. Helping with homework has also become more difficult.... I feel relaly stupid sometimes but the things they now are learning in 3rd grade, geesh! lol.... I just have a hard time following......
I am also available by email and would love to stay in touch regularly if just to lend a ear.
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My kids came to see me at the hospital once I was out of ICU. One was 4 and one was 9 months at the time. I wasn't sure how the 4 year old would be with Mommy having a giant bandage on my head, but once she knew I was still the same ol' Mom, she was fine. She's a lilttle mother hen anyway, so she would hold my hand on my walks aound the halls and quickly learned that if we made it all the way to the nurses station, they would give her an ice pop for doing such a good job! When we got home, she would have to look at my boo boo every day to make sure it was okay and she'd yell at me any time she saw me scratching! It really itched!! Now she comes to PT with me and holds my hand when the therapist puts the surface EMG electrodes on my face - she rubs my hand and says "it's okay Mom..". It's funny. My 9 months old didn't seem to be too bothered by the whole thing. I guess at that age, as long as the food keeps arriving and someone changes your diaper, life is good.
When I was about 4, my Mom had a severed radial nerve in her arm and is partially paralyzed. Back then, they didn't know as much about nerves and such, so she was going to PT, OT, accupuncture - anything at all. I used to go with her and I think that's why I decided to become a PT when i grew up. So, who knows, maybe my daughter will be a brilliant brain surgeon! Or drive an ice cream truck....
I'm sure you'll want visitors once the time comes. Your family gives you a good reason to get back to semi-normal. I think it's good for kids to see that Mom is only human too. We all spend so much time keeping our aches and pains to ourselves so our kids don't know anything is wrong - it's probably good for them to see that sometimes we need help too. I think it helps to teach them to be compassionate towards others. It's amazing what we will do to teach our kids these life lessons, isn't it? There's gotta be an easier way than brain surgery! :D
Lori
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I have always said that the kids that were the students in my class the year I had surgery would, by far, be more compassionate and understanding of otheres as adults!!
K
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The only visitors I had in the hospital - other than my docs, who came by faithfully each day - even the weekends! - were family and I was glad to see them. It gets pretty boring when you're not sleeping off the anesthesia and it's always nice to have a family member help you walk the hallways or help the busy nurses out by getting you ice or juice.
It was tough being away from my kids the 5 days I was hospitalized. They came to see me in the hospital 2 days post op. My parents planned on bringing them the day following surgery, but we decided to wait an extra day. Although I still had the pressure bandage on my head, I looked fairly normal so they weren't upset - just relieved to see me. And I was glad to see them - it gave me a lot of incentive to get out of the hospital and home again. I also hung pictures of my kids, and all the get well cards they made me, on the bulletin board in my hospital room.
It's hard to decide when to schedule the surgery. I decided it would be best to schedule mine before school let out for the summer. That way the kids were wrapped up in their normal routine and activities and didn't have a lot of time to sit around worrying about me. I did talk to their teachers and explain what was going on at home so they could help the kids deal with any anxiety or emotional feelings that might come up the day of my surgery. Having the kids in school during the day also helped my mom because once she got the kids off to school, she could be at the hospital with me. (You know what they say, you never get too old for your mom to stop treating you like a kid :)) My sister would pick the kids up from school and spend a few hours with them until my mom returned; then my sister would go home to her husband and kids. My dad also helped out; it really was a group effort.
A mom's group is an excellent idea - but I have to warn everyone, I don't have a lot of time for communication other than email - and usually I do that late at night or early in the morning when the kids are still asleep, or during my lunch hour at work while I'm eating at my desk. I have a boy and a girl - both will be 12 on February 29th - although my son is older than my daughter by 17 minutes - and loves to remind his "little" sister of that fact ;D
Kaybo, it's so kind of you to say I'm the best. Most days I don't feel like I am, but I give it my best shot.
Jan
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You'll know if it's right to have your children visit in the hospital. That's a very personal decision. My kids never did (4.5 and 1.5 a the time), by my choice. Not only was I not up to it, but my oldest (at the time) was a very timid and anxious preschooler. Seeing me in the hospital not acting like myself would not have been good for him. It was hard enough on him when I came home looking strange and acting different! LOL! My younger one even refused to have anything to do with me until the big bandage came off! :(
If you feel like your kids can deal with visiting the hospital, or even want to, then do it. But if you think it's too much (especially for little ones), then that's okay too.
Katie
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Hi Mary
I too have a child -- but at 25 she was one of my primary caretakers. She's the one who took me to the hospital and saw me through surgery. Before my surgery I put together a binder with every possible piece of information related to my surgery -- including visitors stuff from St Vincents and paperwork from House. I put all the contact information -- phone calls and emails. I gave directions to the hospital and maps of parking. I let the people I needed to know that I would be out of commission for at least two months and put their contact info in the binder. I included my pharmacy, bank, and local stores. Then just as we were ready to leave for the hospital, I took the binder, put it in my daughter's hands and said everything and everybody you need to know is here. I'm going to be busy with other things and I may not be able to answer questions for awhile. It worked like a charm.
David
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Thanks for the input. We'll see how everything goes as to whether the kids will visit. We'll see how hubby and my parents do with the bandages, IV's, and unsteadiness first! How long is the dressing on? it's off when you leave the hospital right? A mom's group sounds great, I too check my e-mail late at night.
Hope
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I had my surgery on a Tuesday and got the bandage off on Friday! Then I got to take a shower!! AHHHHHH!!! That was the best shower of my life!
Lori
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I had surgery on a Wed, went home on Sunday, but the bandage didn't come off until Tuesday! I was actually kinda upset that it was on so long (it's a pressure dressing and it's tight!), but the docs insisted.
Katie
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Katie -
I totally agree with you. Children visiting in the hospital post op is a personal choice - great point.
The decision should be based on lots of factors - anxiety level of children, age of children, how the patient looks and feels post op, etc. In my case it was a no-brainer (no pun intended) as my son has a very severe anxiety issue and has a horrible time being away from me at night time. It was all he could do to get through the first 2 nights I was in the hospital without seeing me. Every case is different and all families are different; as with treatment options, patients should decide what is personally right for them.
As for pressure bandages, it sounds like docs do things differently. I was in the hospital for 5 days and mine came off after 2 or 3 days - I can't recall which. I just remember being relieved because as Katie said, it was tight. I also found it awkward to sleep with it on since the left side of my head felt so heavy and lopsided due to the bandage. I actually had a stiff neck for a couple weeks - probably due to the awkward sleeping position and also the awkward position my head was in during the 7 1/2 hours of surgery.
I couldn't wash my hair until 9 days post op after my stitches were removed. It felt like the longest 9 days of my life. Besides just being dirty from not being washed, it had all the goop I had to put on my scar once the pressure bandage came off. I'm used to washing my hair daily and I can't stand when it feels dirty. Yuck!
Jan
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Is it typical that the head bandage stay on after you are discharged from the hospital? I was actually hoping not to have to tell my kids anything. My oldest is 7, and I have a 5 yr old and a baby at home. I need this AN like a hole in my head... literally!!!
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Mary: When I woke up post op, the only thing on my head was a strip of tape that was sticking to my hair, to the side of my incision,
never had a 'bandage'. I had retrosigmoid.
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That's great to hear. I was imaging a giant wrap over my head that would scare the lights out of my kids. I'm basically hoping to play the "mommy has a headache" card during my recovery period.
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mary~
I had my surgery a long time ago & I think even then I didn't have a bandage when I left the hospital...
K
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Mary: Sorry to 'burst your bubble', but it depends on which surgery you're having, & where you're having it.
Others have had huge bandages on their heads. I live in South Florida - seems they do things a-- backwards here,
I'm the only one I know who DIDN'T have a bandage !! Go figure.....
Check with your surgeon - they can let you know what to expect.
Sorry, but best to be honest. Always good thoughts, really, Nancy
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Hi Mary-
I have it marked on my calendar, all the best. Mine was off before I moved out out SICU.
Call me if you want to talk prior to surgery, I look forward to your posts afterwards.
Joe-
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As far as the bandage goes - everyone's different. I had surgery on Wed (with a big bulky bandage), went home on Sunday, the bandage came off on Tuesday, and the stitches came out the next Wed (two weeks post-op). I begged my doctor to take the bandage off before I left the hospital (more for me than for the kids - that thing was dang tight!), but he wouldn't. I'm sure he had good reasons for waiting, but I can't now remember what they were.
My kids were 4.5 and 1.5 at the time of the surgery. I told my oldest that there was something growing in the very deep inside of my ear that shouldn't be there, and that I was going to the hospital so that the doctors could take it out. He knew I'd feel sick for a while after, but that I'd be fine and that Daddy, Grandmas, and a bunch of other people would be sure to take care of him and his brother until I was feeling better. That worked well for him.
Mary - obviously, you know your family and children better than anyone else here and you know what will work for them. But I'd at least consider letting them know that it's going to be a little more than just a run-of-the-mill "headache." I'm told I had an incredibly easy recovery, and I was home for 3 days before I ever left my bedroom. I couldn't stay awake for more than a couple hours for at least a couple weeks. And I couldn't just get up to help the kids with drinks, retrieving toys, or anything else we normally don't think about. By 4 weeks out, I was pretty much normal as far as they were concerned. But it definitely helped here that they knew Mommy was "still recovering". As you well know, kids are incredibly perceptive and they'll figure out something bigger is up with Mom. And really, all they want to know is that you will get back to being the Mom they know.
So, think about it. I know you'll do what you have to (moms always do!) and your kids will get through it right along with you. This will all soon just be another blip on the radar of life. **hugs**
Katie
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OK...so hubby said I still had a bandage on when I came home -- how would I remember? However, I KNOW it wasn't the big one b/c they had put the arm back on my glasses when I was in a regular room at the hospital.
I agree with Katie 100% -- you know your family the best -- but she had some very valid points (& stated so well, Katie). I did not have kiddos yet when I had my surgery, but have often wondered how I would have handled everything. I was with my friend last Friday so she could get all her teeth pulled and get dentures (she's 38 also - long story - SEVERE case of Periodontal disease) and i was there when her son came in from school. He's 10 and he DEFINITELY knew something was up. He knew she had "dental work" but I think it terrified him because he knew it was more serious than that. I would have told my kids (but that was her decision) -- in fact, my kids knew b/c I did not know she was not telling her son and they were fine with it -- just the usual questions and then on with their little lives when they were reassured that she was OK. (I'll just take this opportunity to say that I will NOT -- I was NOT prepared at all for what all happened and I was the only one to take care of her!! I would do it for her again in a heartbeat but it was a ROUGH afternoon!!!)
Go with you gut -- I think we have those feelings for a reason and I know you will make the best decision for you & yours!!
K
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Thanks on the feedback - you all have really valid points. I guess I might just be fooling myself thatt he kids might not really notice... but I will probably need to say something to them so they don't also wonder where I am while I'm in the hospital. it would be great if mommy and daddy really did go on a vacation! ha ha ha!
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Mary~
I have been thinking the same thing. After 12 years, I am considering the T3 surgery that Nancy had to give her a smile back ("facial paralysis after 9 months," if you care to look at her pictures). In NO WAY am I trying to compare that to your surgery -- it is so different, but I was thinking yesterday that if I had to be away from my kids and my sweet hubby had to use his vacation -- I'm sure we'd both rather be laying on a beach drinking little umbrella drinks!!
I'm here if you need anything!
K
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You definitely deserve a nice vacation! ;D
I have to believe your kids will notice that you're not yourself post-op. And if you try to do everything to pretend you're okay for their sake, you'll probably end up delaying your recovery (sleep, and lots of it, is the best thing you can do to heal the first couple of weeks). There's lots of ways of presenting the information so that it's not scary for them.
Let me know if I can do anything to help!
Katie