Knowing the unknown

[jacobs]

 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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[Obita]

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? 

Wishing you well,  Kathy

[krbonner]

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

[Road Trip Dale]

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!!!!

[britbert]

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

[pattibobatti]

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

[krbonner]

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

[Boppie]

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. 

[Jim Scott]

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.