ANA Discussion Forum
Archive => Archives => Topic started by: krbonner on August 01, 2006, 10:38:52 am
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Both my husband and I have trouble dealing with the unknown (and we wonder why our 4 year old son can't do it either! Ha!). And now that I can say my surgery is "next month" I'm thinking about it more. And I have some questions. If someone could precisely predict my future, that would help a lot! ;) Lacking that, knowing your experiences would be helpful.
1) If all goes well, I'm assuming 1 day in ICU and 3-5 days in the hospital. Did you need books/music/DVDs to alleviate the boredom, or were you too busy/out-of-it/sleepy to care? What did you have for immediate post-op nausea/pain? Did you feel up to visitors aside from your advocate (though the needy in-laws may get banished regardless)? Anything else I should know to expect? I've read through the "what to bring" threads, so I feel pretty confident about that, though any other tips are always welcome.
2) I'm a stay-at-home mom, so my mother (an RN, midwife, and all around wonderful person) is moving in while I can't take care of the kids by myself. And we're getting a cleaning service to take care of the house. But I also have a network of wonderful friends and in-laws who all want to help out (though they mostly have young kids of their own, too). Ideas on what they can do? Other than bringing meals and taking the kids for a few hours. I don't want to create work just so they can feel useful, but maybe I'm overlooking something.
Can you tell I'm a planner? ;D
Katie
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Katie,
Just sent you a personel message.
Paul
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Sounds like you are already well prepared. I am an obsesser, too! You will want to sleep when you get home. I had visitors at the hospital (twins grandsons age 5, too). I loved the opportunity for them to see my owie and bandage. The awsomeness of it all helped their mother get them quiet and respectful of my need to not speak.
Your conversations will be short. The lung power is just not there for speaking a lot. You just sit in the bed and smile like a Cheshsire cat about how relieved you are to be done with it all. At home your need for rest will be obvious. Just turn people loose with your life and let them pamper you with some well needed rest.
Let the boss count your medication doses and take them on time.
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I was to sleepy to care! and I would say 1 day in ICU would be lucky .. most I think are 3 days ... (I was 5 days)
I had some books and etc to read .. but spent most time sleeping ..
Lollypops are a good idea to eat for sweets (with a stick they wont get lost in your month if you have facial issues), and some chapstick!
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Katie. Sounds like you have got things well planned. You probably won't feel like doing much in the hospital except watch tv and that even bothers some pts but I did fine with it. You can always have someone get you a magazine if you do need reading material. Any visits from people will need to be short the first couple weeks as you will need your naps. Having food brought in is the biggest help. You may have a sore jaw for a while so you may need very soft food and not too spicy. I had a poor appetite for a while with all my surgeries. 2 AN's and one leak. Your tastes may be off also. Everyone varies so with this so won't know what pertains to you till after. That's also what makes the waiting such a hard time. Before can be worse than afterwards.
Every hospital and doctor has their favorites for pain and nausea meds. You will get the nausea med thru your IV. My doctor only uses oral pain meds after surgery and you will need to take them with food usually to avoid stomach upset. I had very little pain with my mid fossa and a bit more with my trans lab and then leak surgery but the Vicodin took care of it just fine. You will feel weak but will be up walking very soon. The dressing is very tight and every doctor has his own method of how long you wear it and when the stitches come out.
If you do end up with dry eye,a heavier drop like Refresh Liquigel works better thasn just a plain tears but some places only give you a tears type one for day use and you may have to get your own or ask for a heavier one. A gel is put in at night. This takes experimenting also.
if you wear glasses then you may not be able to wear them over the dressing so having some that you can take the side piece off is good.
The lip balm mentioned previously is good to have. I kept a cosmetic bag on my bedside table to keep small items in and easy to reach. if you take any medications at home,it might be good to have a family member hold on them for you as my big teaching hospital didn't carry my Toprol XL so I requested to use my own. You will have to have a doctors order to do so.
Good luck to you! Cheryl R.
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Carmex. Maybe 2 tubes.
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I only spent 1 day in ICU as predicted, and 5 days total in the hospital. Rode home in the car 2½ hours just fine. Take a neck pillow and sun glasses for the ride. My head bandage didn't come off until discharge day. A lot of details depend on how busy the nurses are during your part of the week.
We took one earpiece off my glasses and hooked the hinge part on a safety pin which we attached to the bandage fabric...hope you read about the boxer shorts, knit is best.
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My husband had a book that he read to me since I wasn't up to reading myself. He would read until he noticed I was sleeping. lol Friends can help out by bringing meals, but you might also like them to come and walk with you when you leave the hospital. The walks will be very short at first. It's nice to have someone with you in case you have any problems with balance.
I thought I would be in ICU for 1 day and then 4 more days in the hospital. Turned out I was in ICU for 3 days and 5 more days in the hospital. Be prepared that your plans may need to change.
Jean
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When you are able to shower again, be sure to lay in a stock of Johnson's No More Tears Baby Shampoo. The shower stall spins a lot less if you can keep your eyes open! Also at home a shower chair and a hand held shower wand are real lifesavers. I couldn't even think about reading a book till about a month post-op--had bad nystagmus (twitchy eyes.)
I got a real kick out of an earlier post couple of months ago from a gal who brought her blow dryer and two different styling wand thingies to the hospital with her! It's a major chore just to stay reasonable clean, get to the bathroom, and get food down yourself!
Capt Deb 8)
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Stay in NICU varies, my first time I was there 2 1/2 days and was moved only because there was someone more ill and I was off the ventilator, the second time I was in NICU overnight only. First time around I was in hospital for total of 10 days, second time 4 days.
With your mother staying with you I would suggest friends be available to give her relief as needed or take you for a walk (short ones). I would limit visitors while in hospital and for the first week at home, believe it or not having "company" will force you to be doing more than you should (getting a shower before they come, stay awake to visit, feel the need to help clean up after or before etc.), the only thing you should be doing for the first few weeks is sleep, sleep, sleep!
Best of luck in a speedy recovery
Kathleen
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I had surgery 4 weeks ago, and think everyone is spot on...I didn't want visitors except family, as I didn't even have the strength to take the phone and say hello to my boyfriend when he called to say he was coming up. Having an advocate in the hospital 24/7 is a must, so hopefully someone can stay with you. I couldn't read, didn't want anyone to read to me, and wanted the room dark for a couple days...watched tv when I could. Having pain meds at the same time as the nausea meds worked best for me. They gave me Reglan (sp?) via IV, which you can have every 6 hours. Weaned myself off of pain meds pretty quick, but they were nice to have at night so I could sleep comfortably....still, thank goodness for Nick at Night when I couldn't sleep. I was in ICU overnight, then spent 2 1/2 days on the neuro-floor. Definitely pillows on the way home if you can lay down in the car, and I wanted a hand towel to cover my eyes...didn't like the sun at all. Make sure you get a dose of pain meds for the car ride home. I am blessed by having a mom that can drop everything and still stay with me a month after surgery, and will probably be here for another month....I still can't drive or do much around the house without becoming exhausted. But, you never know, look at our hero Dale back out on the road in 6 weeks!!!! The reality is you won't really know how much you will need till you are through it, and hopefully your family can be flexible! Good luck!!!!!!! I know all those east coasters will keep you under their wing!!! The brunch sounded like a blast!!!
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Just wanted to add...............I didn't have a bandage :/ and the stitches came out on their own! My sister in laws were at the hospital with my dh all day and they wanted to see me when I got into a room but I just wasnt up to it. DH tried to talk me into seeing them, after all they were at the hospital for about 9 hours or so with him most of the day but guess what, I was the one who had the brain surgery for 10 hoursso I was the one to say tough cookies, tell them I'll see them when I feel better! Anyway......... just take one step at a time and you'll get there. We'll all be here pulling for you, just hang in and do your best. You're lucky to have someone stay with you, you're probably gonna need it! Wishing you all the best!
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When you are able to shower again, be sure to lay in a stock of Johnson's No More Tears Baby Shampoo. The shower stall spins a lot less if you can keep your eyes open! Also at home a shower chair and a hand held shower wand are real lifesavers. I couldn't even think about reading a book till about a month post-op--had bad nystagmus (twitchy eyes.)
I got a real kick out of an earlier post couple of months ago from a gal who brought her blow dryer and two different styling wand thingies to the hospital with her! It's a major chore just to stay reasonable clean, get to the bathroom, and get food down yourself!
Capt Deb 8)
With two little ones at home, we buy the No Tears Shampoo by the gallon at Costco, so all set there! :) And I'm definitely a sweats-and-ponytail kind of gal, so I'll have no problem staying in my PJs all day. It'll be nice to have a good excuse to do so! LOL!
Thanks!
Katie
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Thanks everyone!
I'll have to think about what to do with my glasses. I'm blind without them, but they're the new Silhouettes brand without hinged earpieces - the earpiece is welded onto the lens directly. And I'm thinking there's no way I'll be bothering with contacts for a while. Maybe I have an old pair of 80s-era glasses hanging around I can mangle... Hmmm....
Katie
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what approach are you having? I had translab, and could wear my glasses as soon as the pressure bandage was off...freaked me out putting them on my ear so I didn't wear them much at first, but it can be done. The wound heals faster than you'd think it would. I don't think you need to worry much about them.
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Katie,being prepared for your hospital stay definitely makes you feel like you have some control when all of the other stuff is out of your hands.
As far as creating work for friends,there will be things for them to do if not right away then down the road.It's great to have that ongoing support. Dinners and help with the kids will be just as helpful later on as it takes time for your stamina to return.
I was too tired in the hospital to do much other than listen to the tv (made me dizzy to watch)and a small radio.
Wishing you all the best and hope you enjoy and treasure the time with your children over the next month.Things will just be "different" after your surgery.It takes time to heal and adjust to any side effects (if any)of the surgery.It sounds like you jave a great support network around you and that will help so much with the healing process.
                                           Take care,Tracey
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Hi Katie:
Have something sour to suck on when you feel like it. Sour gets the saliva going on your bad side. My sister-in-law brought me a bag of goodies......my favorite were the sour Jelly Bellys. I couldn't taste much of anthing else but the sour Bellys were great.
What day next month is your surgery?ÂÂ
Wishing you well, Kathy
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What day next month is your surgery?
I'm scheduled for translab on Sept 13 at Mass General in Boston. I hope these things don't get reschedued that often since I have family coming from out-of-town to take care of my children.
Katie
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Katie, just had to get my two cents in ('cause that's the kind of guy I am :) Everyone has given you some great advice and experiences, the one thing that I might add is your concentration level will be nill! I tried to read, wasn't going to happen, I tried to write in my journal, was happening, I even tried to play cards with my dear wife and that didn't happen. I slept alot, had the TV on, for company more than anything else, and enjoyed visitors as long as they didn't overstay their visit. I was in ICU for 30 hours (I had Translab) and 3 more days in the stroke center (thats where they put you in Kansas City), but the care was wonderful as you can imagine.
Never really had any nausea problems because they kept the anti-drugs running in the IV all the time. You will be very sedate in the hospital, they will make sure of that so relax and enjoy your vacation. Get up and walk as soon as you are able...take it in short steps (stand for a few seconds, than sit back down, then walk a few steps, back down, etc.) You will be amazed at how fast your body will adjust to its new configuration.
Eat! and suck on those ice chips, they are great. Nothing is going to sound good, or look especially good, but eat for two reasons. One you will need the sustenance and second if you don't the nurses will give you H___!
Finally, be sure you have PJs or nightgown, whatever you are most comfortable in, it will make a world of difference in your attitude, along with being able to brush your teeth and wash your face. Never thought those two things would bring me pleasure but.....
Good luck, you will be in great loving hands!!!!
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Katie,
I just wanted to add that my kids (5, 2, and 10 months at the time) were kind of frieked out by how I looked when I came home from the hospital. My baby especially didn't want anything to do with me and my two year old was distant. I felt really sad about this because a surgery like that makes you realize how much you love and need your kids. Plus I hadn't seen them for so long! (The older two stayed at my in-laws for 10 days). I also got called a pirate a few times ;). And my 2 year old smiled my crooked smile for a LLOOONNNGGG time and would talk out of the side of her mouth like I do. She is 5 now and I think she is finally growing out of it. I don't know how your kids will react, but maybe this will give you a heads-up. Best of luck.
Brittany
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Hi Katie,
When I was in the hospital, a friend of mine gave me a CD player and wonderful collection of classical music..I never listened to classic music before, but with my right eye covered and my left eye too tired to watch TV, listening to that music became very important to me....so relaxing when you can't sleep.....
And ditto on the carmex!!!!
Take care,
Pattibobatti
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So many great tips from everyone! Thank you all so much! If there are any more out there, I'd still love to hear them.
We're trying to prep the kids (well, the 4 year old) without making them scared. My mother is in town for a few days right now as a trial run for taking care of the kids. My oldest knows about the Thing in my ear, and that the ear on that side is broken. And he knows I'll be going to the hospital for a few days, but that it won't make my ear better. I think my 4yo will actually be able to handle this - he's a very rational, methodical, thinking kind of kid. And if he knows what to expect, he'll be fine (just like his parents!). My 1.5yo will have a harder time, mostly because Mommy won't be around for a while (he's at that age where he *really* clings). But he'll manage, as will my mother taking care of him, and I know he won't be permanently traumatized.
Keep 'em coming! :)
Katie
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Let the babies see your owie bandage, but not the incision. They are very matter of fact about stuff. The separation is the hardest part, so maybe you can tell them you are on a long trip to the doctor, and not too many details beyond that. Your hearing will be good enough that you'd still be able to cuddle and hear them speak. Their child like lips are very easy to read.
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Katie:
Everyone is different so there is no reliable answer as to exactly what you can expect immediately post-op, but most of the responses on this thread appear to be accurate and should be helpful to you.
I was in NICU 4 days. In a 'regular' hospital room (semi-private) for barely a day - discharged on the 5th day. My concerned and loving wife was either in my NICU room or nearby most of the time. She was my advocate, and a good one, too. Who is going to care more about me than my wife of 36 years?
I had little-to-no appetite and I slept a good deal of the time in the ICU. Watching TV was O.K. (I quickly learned that daytime TV is really poor) and I did a little light reading - but not much. My first 10 days at home I did absolutely nothing. I took frequent naps and spent a lot of time in my recliner, half- watching TV - or dozing off....mostly dozing. Apparently it takes some time for effects of the the anesthesia as well as the steroids to wear off. Once they did, I began feeling 'normal'. My energy began returning, my appetite also returned and my balance steadily improved (doing balance exercises certainly helped). Within 4 weeks of my AN surgery I was doing well - and my surgeon was elated with my progress. Now, just about two months post-op, (time flies) I'm pretty much back to 'normal' in most respects. I feel good and I look good (or so I'm told).
I'll begin fractionalized radiation treatments in September to finish off the tumor (approximately 25% was left by the surgeon due to it's involvement with cranial nerves) - and prevent it's re-growth. Once those treatments are completed (6 weeks duration) I'll be discharged from my neurosurgeon's care and finished with this 'AN stuff'. I can't wait! Oh, I still get a 'dry eye' episode once in awhile and my balance isn't 100% (according to my wife- she says it's about 80%) and I have the occasional minor pain where the bone is healing on the 'AN side' but overall, I'm good - and the whole surgery/hospital experience seems almost like a dream, now. Time truly is the friend of the recovering AN surgery patient.
Not all AN surgeries become sad stories. I trust yours won't either. Best wishes as you prepare for your surgery and hospitalization. :)