SML (Scarlett's) updates

[lori67]

Welcome home!  Feels good to sleep in your own bed, doesn't it? 

Hope you have a nice restful day!!

Lori

[suboo73]

And thank you for caring about me, it feels odd, I’m not the one that had surgery.  I’ve been fine, really. 
Rich

Hi Rich and Scarlett! 

Thank you for sharing the pic and wonderful story of Ricky and Scarlett - how cool is that? 
I am so happy things are going well for both of them! 
Now i will look forward to seeing a pic with Rich, Scarlett and Ricky, maybe out on the town having a post-op party!

Rich - Caregiving is a special gift and you were fortunate to be able to help Scarlett thru this experience.  [My family helped my sister thru not 1, not 2, but 3 hip replacement surgeries!]  It takes such patience, persistence, and love to care for another - but it can drain you physically, mentally, and emotionally, too.  Please don't feel 'odd.'  The caregiver is indeed the 'tie that binds.'

And that is why we are all here, sharing and caring.

All my best to you! 
Continued healing to Ricky and Scarlett!

Sincerely,
Sue

[NancyMc]

Rich and Scarlett,
I've been away for four days, a little spring fling in NYC, to break up the cabin fever (turns out the weather was better up here than down there, but oh, well, got to spend a whole day in the Am Mus of Natl History, first time in almost 50 years).  But I slipped into a book shop cafe at every chance to keep up on your reports.  When I arrived at my college roommate's house, I was all doom and gloom about the various likely outcomes of AN surgery.  But when I left, she looked very sad and expressed her concern for my future.  I looked at her as if I didn't know what she was talking about and then said, "Oh, that, well . . ."  It seems the reports of Joebloggs' and Ernie's and Scarlett's (and Ricky's) awesome outcomes have given me the sense that I, too, shall have the outcome of which dreams are made.  I'm actually looking forward to getting it over and done with.

So, on the way home from NYC yesterday a lightbulb went off.  Worcester, isn't that where Maxwell's is, and aren't we going to be there at about lunch time?  We called Dave's daughter and had her google directions.  A lovely bloke greeted and seated us for a delicious lunch in a creatively decorated space.  There was a very large celebration of the life of Kenny happening on the main floor, but it was so cheery, we thought it was a wedding party!  We asked if they had the apple fritter on offer, but as expected, only on Sundays.  Four weeks from today.  I'll be in and out and stuffing one of those babies down.

Now, Scarlett, what truly are your symptoms other than visual.  Surely, some pain somewhere, balance, but what about the metallic taste?  I was sort of counting on not feeling like eating since I've been indulging a bit and putting on the pounds like craaaaazzzzy!  So, if that's not to be expected, I better stop the party now.

I am elated, even euphoric at all the surgical success stories.  No fear whatsoever remains.  Remarkable.  Thanks for going first, all you guys. 
Thank you for the detailed reports.  Dave is feeling the pressure.
Positive vibes for a continued smooth recovery,
Nancy

[Captain Deb]

Scarlett,
Glad to have you in Postieland and I'll bet you are glad to be home!  What a great story getting to meet Ricky and a great entry for the journal.  Best of luck in your recovery and I hope you can take advantage of some pretty spring weather to get out and walk--it will really jump start your balance compensation if you can get out a couple times a day. 

Be well,

Capt Deb

[joebloggs]

Sounds like  you're doing great!  Hurrah!!!

[Rich56]

Hi Nancy,

Scarlett is still having trouble looking up and down trying to type without getting dizzy.  But, she would like me to let you know the nausea only lasted the first two days counting ICU when they moved her around, and the neck pain was substantial during that time.  On the third day post-op the neck pain was not too bad, just could't seem to find a comfortable head position.  The Percoset, and the Valium seemed to work best for her.  She was told by Dr. Barker that the headaches will be worse when she finishes the Decadron, which she just did, and that the Percoset, Tylonol, and caffine should help.  The feeling on the side of her face is coming back, as well as taste.

The ICU nurses told her slow and easy wins the race, and that's what she plans to do.

Scarlett sends a thank you to everyone who sent their prayers and well wishes, she truly believes it helped with her positive outcome.

Rich & Scarlett

[SML]

Capt.Deb,

Your not kidding I'm glad to be home.  Still a little cold to be out for walks but soon, very soon.

JB,

I'm so glad your recovery seems to be on the right track as well.

Clear sailing & paddle boarding ahead,

Scarlett

P.S. Steve I'm checking out the colors

P.S.S. typed by Rich

[NancyMc]

Thank you, Rich.  Every tidbit of information helps me prepare for my future.  What is caregiving like?  Do you feel you must be constantly vigilant, or do you have plenty of time to pursue your own work, interests, sleep, etc.?
Nancy

[Rich56]

Hi Nancy,

I do not think it is a good idea to be alone after this surgery. 

I took time off from work to be with Scarlett, utilizing The Family Medical Leave Act, and planned on doing nothing but staying with her.  She has only been home 2 days, and I let her do whatever she can, but am there to do whatever she can't, though she does not like to be babied.  Right now she is not trying to do much, and that's fine.  Her balance is too questionable.  As she starts to do more we will see just how much help she needs and what my role will actually be.  I'm glad she wants to go easy with this recovery.  Currently not much has changed, so I'm not really caregiving.

I don't know if I answered your question.

Rich

[Rich56]

Nancy,

Here's something for Dave.

At MGH in the “Gray Family Surgical Waiting Areaâ€? there is a nurse that goes back and fourth to the operating room and gives you an update every 2 hours, plus and minus a half hour.  There are also 2 volunteers that are there to answer questions, and they have computers that have general information regarding the surgery.  After 3:00 p.m. there will only be the 2 volunteers, and all they will be able to tell you with regard to the surgery is when it is done.  My sister-in-law was with me, and she taught me how to play cribbage.  I figured there was a lot to that game, and the concentration would keep my mind occupied.  I was right.  By keeping yourself occupied, sitting where you can’t see the clock unless you want to (which is the big table on the left as you walk in to the ‘Gray Family Surgical Waiting Areaâ€? at MGH), taking a walk throughout the wait to get a coffee, a muffin, a soda, or just going to the bathroom will help the time go by.  We were fortunate to have a nice guy and his stepdaughter at the table and we chatted and told stories.  Anything you can do to keep your mind off the time, and the surgery will help.  When the volunteers get the call that the operation is over, and the Dr. is on the phone, she will take you to a private waiting room where you can talk to the Dr.  And when you get the call, don’t take off like a rocket by yourself like I did, bring the one’s that came with you.  I just took off, not trying to be selfish, just not thinking.  The absolute most important thing for you to do is not worry about how long the surgery takes.  These people are the best, and masters at what they do.  Taking longer doesn’t mean trouble, as I was feeling, I means their skills are being put to the test, and believe me they are up to it.  All caregivers can do is be patient, and keep your mind busy.  No one can guarantee a great out come.  There is a higher power in charge of that.

Hope this helps,

Rich

P.S Let's not forget the power of The Magic Scarf

[NancyMc]

Rich,
Dave is planning to load his work software (3D design) onto my laptop and work while I'm in surgery.  Do they have wifi in there so he can update everyone?
When I get home from the hospital, he will have his desktop computer here at my house to work while he monitor's my progress toward independence.  He won't go anywhere until I am able to function fully without him.  My mother who is 90 will do the running of errands and delivery.  She lives up the road.
Thank you for the information.
Does Scarlett sleep on an incline for her headache(s)?  Did she have a physical therapist in the hospital who told her what to do at home (exercises, etc.)?
Wishing you continued progress without bumps in the road,
Nancy

[EJTampa]

Hi Nancy,
 
I was told that I HAD to sleep at an incline, not for headaches, but to help keep the swelling down.  The doctors wanted my head higher than my heart, and said 20 to 30 degrees would be the best incline.  They also told me not to sleep in a recliner because they didn't want me straining to sit up.  I was instructed to roll onto my side before getting up so there was no strain on the neck.  I only had to do that for 2 weeks, but that was 2 weeks of not much sleep for me
 
Also, at least some of MGH is covered by wifi.  Here's the excerpt from the MGH page:
 
Wireless Internet Access

Wireless Internet access is available for public use in the hospital’s waiting room and other public areas of the hospital. Stop by an information desk for details.

 
Rich and Scarlette,
 
Looking up and down is still an issue for me as well.  I get immediately light-headed.  I think I'm getting a little better at side to side.  I've been practicing looking at an object and moving my head left to right and right to left.  In my case, I can track better turning my head to the left than I can to the right.  It gets better, slowly
 
Ernie
 
I imagine

[NancyMc]

I imagine

 

Thanks, Ernie, for doing that research for me.  I did notice that I could pick up a signal on my ipod touch in Dr. Barker's office but not in Dr. McKenna's, so I was hopeful.
Nancy

[EJTampa]

Heh.  The "I imagine" was a leftover from a sentence that for some reason, was only partially deleted.  It wasn't meant to mean anything
 
Ernie

[SML]

Hi everyone,
It’s me! I’m giving this typing thing a little test run to see how I do.

Nancy, The only restrictions I was given as far as sleeping positions go were during my stay in the ICU. I was propped to either my left or my right side with a little incline, but to tell you the truth, there was absolutely no comfortable way to be during that time. When they moved me to the regular room, the neck pain had subsided. I was able to position the bed to any angle I wanted. Nothing was said at all about being on an incline. I actually found it more comfortable to rest all the way on my left side (my good side) with one pillow under my head and the other pillow hugged in front of me. I also found that I could roll to my A side in a similar fashion (not for too long, just enough to give my good ear a break) and still be reasonably comfortable.  Here at home I am doing the same and although I’m getting up to take my pain meds (I’m getting stabbing pains more so than just a constant headache) I am able to get back to sleep.  I am done with the Decadron now so I am a little nervous as to how the headaches will be, Dr Barker said they may get worse after getting off the Decadron, but that Tylenol, Percoset, Caffine, and the Valium should take care of things. He said it’s not good to stay on Decadron for too long. By the way, Dr. Barker has a beautiful smile!!

I can’t tell you how relieved I am that this is over. Trust me, you are in excellent hands and Millie (although added more stress than needed) is just a fading memory. I can’t say enough about the staff. Oh, be ready to be stating your name, where you are, squeezing fingers and having flashlight shined in your eyes during your stay there, Normal precautions.

Rich here, I’m taking dictation.  The dizziness has arrived.

No, I was not given any exercise instructions.  The therapist said if she gave me something to do it might do more harm then good since she won’t be the one working with me on a stead basis to see what is working and what is not.  Instead she gave me a small list of places that do physical therapy, some that she knew did Vestibular Physical Therapy, and a few that she thought might offer it.  When ready we’ll start making a few phone calls and find out what it is all about.

Ernie, I haven’t tried to do any PT yet.  I’ve been just relaxing on the couch with one of my cats.  Make sure you get your rest in there too, and try not to over do it.  I suppose that’s easier said than done.  I expect I will start do things soon.

Talk to you soon,

Scarlett

P.S. Nancy I did see someone with a laptop, and it looked like a wireless router near the ceiling.  Ernie, I agree with Scarlett, please take care of yourself.  We hope you have continued success on your recovery.