Author Topic: Caregiving During and After Surgery  (Read 13416 times)

sgerrard

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Caregiving During and After Surgery
« on: April 12, 2009, 10:41:41 pm »
This is an invitation to Rich, Chris, Dave, and other recent caregivers, and any other caregivers as well, to comment on what it is like. In particular, during the week leading up to surgery, the day of surgery itself, and the weeks after.

It seems to me it has been valuable for the caregiver to join the forum, or at least visit a little, as well as provide the requisite updates. I would like to hear more about it, and I think other pending caregivers would too. We get little pieces of it here and there, but it might be useful to have a topic on the subject as well.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

vossman

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Re: Caregiving During and After Surgery
« Reply #1 on: April 13, 2009, 02:56:26 am »
Becoming a care giver has been one of the most challenging, scary, and rewarding moments of my life as Anissa and I make this journey.  I have to say that I write this so that it may help someone else who travels this unexpected journey and that it may help in some way.

Our journey began in mid-February when Anissa got the call from her ENT that they had "found something" on the MRI.  Anissa called me and told me that we need to go to the ENT office as soon as possible so that they could go over the results with us.  I have to say that my drive to meet her at the ENT office all these different scenarios went through my head.  I just thought to myself what in the world could they have found?  When we met at the office Anissa tried to tell me what she knew, but we really didn't understand all the terminology and so we ended up just waiting for the doctor.  Nothing had prepared me when he said that Anissa had a tumor in her head!!  My heart just sank and then all my emotions came to the surface and my eyes welled up.  Of course at that point then the ENT asks "do you have any questions"?  I just remember asking "how do you remove the tumor"?  I have to say I got extremely scared when they said that they drill a hole in the scull to get the tumor out.

From that point I think the shock and scariness sets in and you go into finding all that you can about AN's.  I remember coming home and Anissa and I getting our computers out and just started researching all we could.  I have to say for us that the shock hit me first just thinking about everything.  I was a river of emotions and felt very weak, but wanting to be strong for Anissa.  That was one of the hardest parts for me was just knowing that I need to be strong for Anissa, but no being able.  After a few days I was able to get over the shock and just started focusing on the next step, which was our appointment in Salt Lake City.  After our appointment is SLC Anissa and I were at least able to focus on the surgery date.  I guess when your in the process all you have to look forward to is the next step of the journey.

During this time Anissa found this forum and began telling me about all of you folks and how supportive you were of her and her condition.  I have to say that this forum was invaluable as we proceeded along in this process.  From that point we were focused on getting through this and getting on with life.  Even though we were focused we still had the fear of all the what ifs -- Are we choosing the right treatment?, are we choosing the right doctors? etc. Therefore this process made us do some things that we have needed to do for a long time.  Anissa and I had put off doing our wills and all of that stuff that a person really never wants to deal with, but we knew with traveling and having four small children that this had to be done.  After working through these things and deciding on treatment we could move forward with peace and confidence knowing we had chosen the right treatment for us.

Once Anissa and I had things in order we made the journey ready to put this behind us.  The day of pre-ops went well and we were able to meet up with Patti, Andrea, and Denise from the ANA forum in SLC, who had been in contact with Anissa.  Their knowledge and experiences were very helpful to us and they were able to discuss some of the expectations.  With that meeting it sure helped us prepare for the days ahead.

The day of surgery was probably the most stressful day that I have ever had.  Anissa went in at about 8:30am and I had to say my goodbyes and give hugs.  They said that they would update me every two hours and that we could wait in the waiting room.  That waiting is just something that I don't care to do ever again and I'm sure that my body doesn't need that again.  Every time the phone would ring and they said they had an update for Anissa I think my heart would about pound out of my chest.  Fortunately I was able have internet and I was able to update Anissa's status with new reports on her progress every two hours.  It was great to be able to write down what I was going through on this forum and having you folks respond to the updates with encouragement and support. By the way THANKS AGAIN!!  That eleven hours of waiting was brutal, but in the the end everything worked out well and Anissa did great.

I did take that advice everyone gave and did try to rest as much as I could while Anissa was in the hospital because she was in good hands.  Once we got home it has been an adjustment but we are doing well.  Thankfully Anissa's Mom has been here during the week to help around the house and that allowed me to get some other things done.  With four small kids and trying to keep them occupied so that Anissa could get her rest has been a definite challenge. The kids are adapting knowing that Mommy needs her rest and thankfully Anissa is making big strides to a great recovery!

Although this journey has definitely changed our lives it has also brought us closer together and has made us stronger.  There are so many things we took for granted before, but now we cherish.  The best advice I can give to future care givers is to use this forum and prepare yourself with all that you can for the journey ahead.  For Anissa and I we had to focus and stay positive as best we could and never let that seed of doubt take over.  Anissa and I both have a lot to live for and we drew upon our faith, love, and this forum to pull us through.  My hope is that I can "pay it forward" and help someone else along the way.

Chris
Chris
Anissa's other half

suboo73

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Re: Caregiving During and After Surgery
« Reply #2 on: April 13, 2009, 03:37:51 am »
Rich,  Thank you for your insight into caregiving thru AN surgery.   :)
Pretty amazing experience, isn't it, getting your priorities in order (like the wills) and having such a positive attitude.
As one of MANY in my family caring for my younger sister, who had elective hip replacement in 2000, i can tell you i learned a lot, too.
(Her 1st surgery did not go well, and she later had 2 more...)
What i only understand now is - i wish she had had a place like this forum to go to...
When things were not going well, she talked to us and the docs - but i can see how this type of forum would have been so helpful.
I learned that caregiving is stressful and you do have to take care of yourself.
Thank you, again, for sharing your experience with us!
Sincerely,
Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

leapyrtwins

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Re: Caregiving During and After Surgery
« Reply #3 on: April 13, 2009, 06:00:09 am »
Great topic, Steve.

Being the one who was asleep during the surgery, I'm anxious to read the perspectives of those who weren't.

Chris' response was very interesting; can't wait to read more.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: Caregiving During and After Surgery
« Reply #4 on: April 13, 2009, 07:52:42 am »
Thanks Steve for starting this!  I have to chime in and watch this carefully for one reason.

I am now the caregiver for my dad for a different situation (non-AN).  It is VERY valuable to me to learn about being a caregiver for one that is loved dearly and what all (emotionally, physically, etc) others have endured in their Caregivers role.

Chris, thank you SO very much for sharing this with us... I have learned from it... trust me.. and hoping other Caregivers chime here soon. I need a crash course....

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Caregiving During and After Surgery
« Reply #5 on: April 13, 2009, 01:24:11 pm »
Phyl -

good luck in your role as caregiver to your dad.

I'm not there yet, but I anticipate being in that same boat one day with either or both of my parents.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

ppearl214

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Re: Caregiving During and After Surgery
« Reply #6 on: April 13, 2009, 01:45:16 pm »
thanks Jan.. working on it :) xoxox
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

mimoore

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Re: Caregiving During and After Surgery
« Reply #7 on: April 13, 2009, 02:20:08 pm »
Great post Chris.
I too was asleep and dreaming during surgery.  ::)
I made gift bags for my family and friends with things to do and eat while I was in surgery (12 hrs). I also tucked a card in each bag telling them how important they are to me. I have been told the wait is the worst. My husband often says it was the longest and worst day of his life. He explained that his emotions were right on the surface and when they received updates they all cried - good tears. I think he thanked  the surgeon and god a thousand times that day.
After surgery while I was in ICU I asked my family to talk to me while I was sleeping. If I couldn't respond I know my subconcious was taking in the love. I also feel that it is important to talk it helps you sort out your feelings. I was kissed a hundred times and their love saw me through this. They supported each other.
The days following were very hard on my husband... I did not want him to leave my side... I got scared and had panic attacks. He was a trooper and held my hand constantly. If he had to run an errand he would get one of our grown daughters to stay with me or a very close friend.
Can anything really prepare you for what lies ahead?
I think as a caregiver it is important to be there, to rest, eat healthly foods and let them know how much you love them. The power of love is remarkable!
Hugs to all caregivers.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Rich56

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Re: Caregiving During and After Surgery
« Reply #8 on: April 13, 2009, 04:46:47 pm »
Hi Steve,

Thank you for this thread.  Warning!, I have a tendency of being long winded.  However, I will try to stay focused.  Please let me know if this is over the top.

Chris I thought your post was awesome, I just hope mine is not too raw or off point.

As of this post my wife is 26 days post-op.

The weeks leading up to the surgery were tearing me apart.  I couldn't believe that my wife's life was about to change forever, and I couldn't fix it.  It was, IS, horrible.  I became emotional very easily.  The Saturday night before her surgery we were at the laundry mat, like every other week.  But this week was different.  Would this extremely simple task that only took an hour, where we just sat and talked, and watched the laundry tumble, become too much?  Depending on the outcome of the surgery, would people be watching her when they picked up on any of her symptoms and upsetting her, would all the people walking around or just the tumbling of the laundry make her dizzy, what about the noise of the machines and the voices, would that drive her nuts?  Such a simple thing, right?

For weeks Scarlett had been scouring the Internet for information.  Finally she came across the ANA web site.  Yes there is a lot of information on the site itself, but it wasn't until she got on this forum, that our outlook and perspective took an extreme turn for the better.  The information that was just words on paper, suddenly had a voice.  The possible outcomes or scenarios now had emotion.  And the gaps that were in the information gathered, were beginning to be filled in.  You can gather all the information you want to, but there is no substitute for real life experience.  The individuals on this forum helped us put the information that we gathered together, filled in the holes, and would openly and honestly tell you what it felt like to lose your hearing, to have different noises in your head, to have a combination of vision and balance problems known as "Wonky Head"?, and of course facial paralysis.  You can't get this from a newsletter, or a textbook.  One of the biggest issues everyone tried to drive home was that each AN journey is unique, no two are the same, each experience, and outcome is difference.  So, take what you learn, prepare yourself the best that you can, and understand the rest is in someone else's hands.
Knowledge is power, but there is nothing anyone can do about that helpless feeling you will experience.  This will be an emotional rollercoaster, you can't control.  But, you will get though it.

The week leading up to the surgery, while still very emotional, now had focus.  We understood what we needed to do to prepare ourselves for "The New Normal"?.  We got the house spring cleaning wrapped up, lined up family and friends to come stay with Scarlett, so I would be able to go out to do the banking, shopping, post office, laundry, and so on.  Scarlett had also prepared foods in advance, so I wouldn't have to cook.  She's unbelievable!

The day of the surgery was quite an experience.  I hope this isn"t over the top.
I got to the MGH "Gray Family Surgical Waiting Area"? at 6:45 a.m.  There is a nurse that goes back and fourth to the operating room and gives you an update every 2 hours, plus or 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 was only the 2 volunteers, and all they could tell me with regard to the surgery is when it was 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.  Later a close friend arrived and joined in the wait.  We didn't remember hearing that the updates would stop after 3:00 p.m. and around 5:15 p.m. or so I started to panic, it's been over 8 hours since the surgery began and Dr. Barker is not done yet.  I was thinking there has to be trouble, the nurse said during one of her updates that the tumor was sticky.  I was becoming unglued, oh my god, this isn't good!  Finally, at 6:44 p.m. one of the volunteers got a call, came over to me and said "Dr. Barker's on the phone".  She took me to a private waiting room, and closed the door as she left.  The impact of the immediate isolation was a shock.  Just me, a phone, and the empty seats where other family members could have been setting.  My heart was pounding, I was shaking all over, and the fear was unbelievable.  I picked up the phone and Dr. Barker said, we're all done, and she's doing fine.  The tumor was benign and we got it all.  We had to cut the hearing nerve, because it was just too involved.  However we had good response from the facial nerve, so that should be okay, we'll know more as she recovers.  I repeated back to him what I heard, and he said, it was correct.  By this time I was falling apart and all I could get out was, "your great"?.  He chuckled and said thank you, that's my job, or something close to that.  I thanked him again and hung up the phone.  I could hardly hold it together, I was so happy, the tumor was benign, they got it all, and they had good facial response.  I left the private room and walked towards my sister-in-law and our friend.  I couldn't speak, so I just gave her a thumbs up until I could tell them what he said.  I knew Scarlett was already basically deaf in the AN ear, and that the balance issues were part of the "New Normal"?.  So really I didn't even think of those, they were already a reality.  It was explained to us from the start that the operation was about preserving the facial functions, and that the rest would be a bonus.  Now I had to wait to hear when we could go up to the ICU waiting area.  The fear was easing somewhat and I stopped shaking as I kept reminding myself that they had good facial nerve response.  Finally at 8:10 p.m. we were told we could go up stairs, to the ICU waiting area, where we waited until 8:30 p.m.  As we walked down the hall toward her ICU room the fear grew and I thought I would explode.  Walking over to Scarlett, she looked peacefully asleep.  Then someone said something, and her eyes opened slowly, and a small smile emerged, accompanied by a blink, and I lost it again, as I almost am now the emotions seem to be sticking with me, my sister-in-law and I hugged and cried, as she chanted she's okay, she's gonna be okay.  I turned and said hi to Scarlett, gave her a kiss, and told her she looked perfect.  I told her Dr. Barker said the tumor was benign, and that they got it all.  I gave her another kiss and told her I loved her, and told her again her face was perfect.  Our close friend is a Neuroscience ICU Nurse in a near by hospital, and she gave Scarlett a quick once over her self and told us she's doing fine.  After 15 - 20 minutes we left so she could rest.

I wanted to take you along with me so you will realize that emotions are going to be strong, and will break the strongest of the strong.  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 Area"? 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.  And when you get the call that the surgery is done, 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.

The day after surgery Scarlett was still groggy from the surgery.  She couldn't eat and was still connected to the IV and things.  On the second day after surgery it was like someone flipped a switch.  She was eating some, mostly ice cream, fruit, and drinking plenty of liquids.  She was disconnected from everything, and walking to the bathroom without any type of assistance.  The hospital staff also had her walking down the hall, as well as up and down some stairs.  She was released the third day after surgery.  I was concerned that the 1 ½ hour ride home might be hard on her, but she was fine.  I watched her head as she sat backward into the car, how she walked, stayed behind her on the stairs once we got home, and basically watched every move she made so she wouldn't hurt herself.  I did everything but go the bathroom for her.  This is your place as the caregiver, I'm sure you won't mind one little bit, just as I didn't.  As she wanted to do things for herself, I stayed close and let her alone.  It took Scarlett several days before she could type on the computer without getting dizzy.  She is improving every day.  Today she actually made her maiden voyage driving 3 miles up the street to the grocery store while I finished up on this post.  She said that looking up and down the shelves made her pretty dizzy, but overall the experience was okay.

As a caregiver, I keep an eye on everything she does to see how she is handling what she is trying to do.  But, as with every little chic, they will eventually want to leave the nest, and you will reluctantly have to let them fly.  As Scarlett and I say "that's the plan"?.

You too will do fine as a caregiver.  Inform yourself, don't be afraid to ask for help be it from the people on this forum, your family or friends.  You'll be amazed at the support you will receive.  Dig deep for the strength you will need for the journey ahead.  Remember that it is up to you to keep your  AN loved one out of harms way, eating regularly, taking their medications on time, getting their rest, and helping them regain their independence as soon as possible, for their sake not yours.  Get up with them when they get up regardless of the time, you're the watchdog.  One of the biggest things you can do is take care of your self too.  You will be no good to your patient if they are worried about you all the time.

My hope is that my experience helps someone else's journey as a caregiver.

If I can help you some how, please post or PM me, and I will do my best.

Rich
« Last Edit: October 14, 2012, 04:14:57 pm by Rich56 »
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

sgerrard

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Re: Caregiving During and After Surgery
« Reply #9 on: April 14, 2009, 08:49:49 am »
Chris and Rich, those were great reports. Thank you guys. Rich, I don't think that was over the top or too raw. As Chris said, it is a challenging and scary time, and you captured that well.

I am still surprised by the intensity in both accounts of the day of surgery itself. Even with some preparation ahead of time, it really puts you through the wringer. You both did great, though, and I think these stories will help others see that they can do it too. It is not what you know, but how much you care, that matters.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

vossman

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Re: Caregiving During and After Surgery
« Reply #10 on: April 15, 2009, 09:49:09 pm »
Rich,

Good job I really enjoyed reading your post.  It was really neat to hear your story from start to finish.  It is definitely a river of emotions on the days leading up to and the day of surgery.  I'm glad I was glad to see that you had so many of the same emotions that I did.  I also know that I have acquired several more gray hairs since surgery day. 

Thanks for sharing Rich and thank you for starting this thread Steve.

Chris 
Chris
Anissa's other half

NYCSinger

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Re: Caregiving During and After Surgery
« Reply #11 on: March 05, 2011, 09:47:35 pm »
Thanks so much for posting this thread!  My boyfriend is going into surgery in 4 day and I've been all over the place emotionally.  Trying to be there for him but having my own worries and fears as well. I was also very interested in hearing what the wait is like on the day of surgery.  I think that will be a challenging day, but this has helped me feel a little more prepared.  Thanks again!


krishnay

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Re: Caregiving During and After Surgery
« Reply #12 on: November 10, 2012, 07:58:19 am »
Hello all,

I am writing this as a caregiver to my husband.
to give you a background of our AN journey...my husband is 31 years old. he was diagnosed on march 26th 2012 with a 2.7cm left sided AN compressing on the brain stem.it was quite shocking when we found out because he was very healthy and active we were in the best time of our lives.He was having some hearing issues and tinnitus so went to an ent.he tried some steroids but with no change sent him for an MRI.
it was shocking and overwhelming...i felt like i was in a horror movie.
i spent a lot of time on the internet researching about it.
we had 40 days to think and digest this before we met the surgeons on april 30th at johns hopkins.
the doctors explained to us that since its large and putting pressure on the brain stem surgery was the only option.
so we scheduled it for may 10.

now here are some things that we did preping for surgery.
since we had 40 days i helped my husband put on some 10 pounds and he worked out,did some breathing exercises..
we tried to prepare ourselves the best way we could for the big day.
i stopped working since 2 years which turned out to be a good thing because i was a 100% there for this.
but nothing prepares you for such things.

i never had to deal with any such situations in life...we don't have kids yet so i was really overwhelmed.

the day of surgery we were at the hospital by 7 am, my cousin flew in from indiana to stay with me (her husband had a surgery for a brain aneurysm so she knew what to expect).

the surgey went on for 8 hrs and they kept me informed that it was going well.the surgeon met me later and said he did very well the tumor was all out and it had grown to 3 cm by the time of surgey.to say the least it was the toughest 8 hrs of my life and i still have trouble today thinking about it.i sincerely hope and pray nobody should gothrough this.

Then finally after 10 long hours i was allowed to see him in the ICU.i saw him and just fainted because it was so shocking to see him hooked up to the monitors and he was dwarfed by it all
i went back to the hotel that night had no sleep at all.
the next day they moved him to a regular room and the next 7 days i was next to him all the time.
the nurses and doctors were so wonderful we are truly grateful for everything they did for us.

they discharged him on the 18th to a rehab hospital in Maryland close to where we live.
my sister in law flew in to stay with us for few weeks. so we took turns and then by this stage he had lost 18 pounds because the tumor was located next to brain stem he had a lot of trouble swallowing.
so in the rehab hospital they did a swallow test and he failed and they took another MRI. and they thought he had a stroke after surgery.
so the night mare started all over again when they called 911 and sent him in an emergency vehicle to a hospital next door.
we spent 5 days there and he was put on an asprin and since he couldnt eat or drink they put a peg tube on the stomach. and discharged him back to the rehab.

the next one week he started to walk again slowly and he had physical and occupational therapy and finally he came home on June 3 2012.

This is a long story because as i said before we tried to prepare as much as we could but nothing prepared me for these challenges ..i couldn't believe my eyes when i saw my husband of 7 years ,25 days before he was walking driving eating now everything is such a feet...

the rehab did an excellent job in training me to feed him through the peg tube to clean the dressing around it, take care of his eye,put the moisture chamber, help him into the tub.
i did my best to help him do everything.

the next couple of months we saw real progress,its 6 months today post op.
i am happy to report that he is completely independent when it comes to bathing,dressing etc.
the peg tube came off in 5 weeks he eats everything and is back to his normal weight.
he is back to work after 3 months from surgery.
he cant run yet but can walk well,goes to the gym on his own.

we still have challenges with the eye but it looks promising because the left side of the face started moving again...
i take pride in little things he does ...and the most beautiful thing is when he gives me the 3/4 smile.

nobody could have told us what life would be like.
i did get help from family and friends ....and we are grateful to all the nurses and doctors ...
i sill have trouble sleeping and I'm very emotional when it comes to him.

we did meet other AN members at the DC support group. and it gave us some perspective.

we are looking forward to the future and i wish i knew everytime i cried or got scared that tomorrow will be better...

so for everybody out there good luck and accept help,try to prepare as much as you can educate yourself.we found out about the groups and that Thai chi helps with balance, i do a lot of reading about AN.

may god bless you all

TNMTMAMA

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Re: Caregiving During and After Surgery
« Reply #13 on: May 28, 2015, 09:07:55 am »
I don't know if any of the 'posters' will see this, but I wanted to thank them for their honesty. Tears flowed down my face when I read some of these posts because I said, "THAT'S IT!" I feel less alone knowing that someone understands.
« Last Edit: May 29, 2015, 03:44:43 am by TNMTMAMA »