Really

[bardtoob]

My prayers.

 

[overedge]

This is wonderful news, @Gerry. Praying for continued progress and healing.

 

[Spun Silver]

I am praying for her!!
Gerry just don't press it yet. People were pushing me (because they wished for themselves that I was better) and I just felt worse about myself and it showed when they left. I kept thinking I was a loser. My nurse sat with me one night and told me it wasn't necessary to live up to their expectations. Everyone goes at their own pace.
I can tell you she is confused, scared (very very scared), and if she is like me, I tried to act as normal as I could. It was so much energy too soon. Instead of sleeping and healing, I would lay there and beat myself up. I worried about letting people down. It lead to depression.

Very important point.

Sometimes I read posts on a FB page called TBI Tribe to remind me what it feels like to be a patient/survivor. It is a completely different experience. Both are traumatizing. I thInk for us it was actually harder on me, at least consciously, because of my husband's refusal to acknowledge that he changed in any way. To ths day he has never manifested any significant depression. But many people do come to realize how their injury/stroke has changed them and it is often very painful, sometimes desperately so.

ETA: It is great to see you posting again, @mysticchic. I know you have been in this hell. I am happy that your recovery has progressed so much and wish you a lot more recovery in the New Year.

 

[LilJen]

Level 4, +5 GOE across the board (stealing the +5s before they're actually in ISU play).

 

[pat c]

Reposting it so it's easier to find:

Rather than cards or flowers, I was asked for a donation address for the U of A:

http://www.universityhospitalfoundation.ab.ca/

Remember it is in Cdn Funds.


Cards
The mailing address is:

Cards_4_Lee

Bentley School
Box 299, 5314 - 49 Street
Bentley, Alberta,
T0C 0J0

Updated as per Gerry's post
If you guys have an urge, it might also be nice to send a card to:

The staff at Neuro-recovery, Unit 4G3
University of Alberta Hospital, 8440-112 Street NW,
Edmonton Alberta
T6G 2B7

 

[mysticchic]

Very important point.

Sometimes I read posts on a FB page called TBI Tribe to remind me what it feels like to be a patient/survivor. It is a completely different experience. Both are traumatizing. I thInk for us it was actually harder on me, at least consciously, because of my husband's refusal to acknowledge that he changed in any way. To ths day he has never manifested any significant depression. But many people do come to realize how their injury/stroke has changed them and it is often very painful, sometimes desperately so.

ETA: It is great to see you posting again, @mysticchic. I know you have been in this hell. I am happy that your recovery has progressed so much and wish you a lot more recovery in the New Year.

Thank you! I have some great friends who have stood beside me through this. That is the most important thing in healing. I have a long way to go. I''m sure on the TBI page they say that caregivers and survivors need to make time to just be me and worry about me. Sometimes It's really hard to post because things come out jumbled. I would be happy if the vertigo would go away. Maybe I could drive. I hate depending on others.
Gerry, before she comes home make sure you have things ready. If you are interested, PM me and I can make a list of things for TBI survivor would need. But the most important things are origination and routine. My friends put everything in a place for me because memory issues. Also, have a routine that will happen every day. Even PT and OT. My OT guy would just come when he felt like it. I didn't like it. It sent me into a panic. Give her plenty of notice of a change in her routine.
She will have times of being mad. Forgive her or act like it never happened.

 

[Asli]

Fantastic news about Lee speaking already!

 

[Rob]

It is a happy new year for sure!

 

[4rkidz]

Bumping up, I just read @Gerry posts to my mom, she remembered all we went through with my dad an said how much it helped her to get the emotional an positive thoughts, she thinks we have a nice supportive online community (we do).

 

[Japanfan]

"... and miles to go, before I sleep."
Please keep praying for her; she has a long ways left to go.

And you by her side for each step of the journey.

That's got to be a huge plus that will help her to recover more quickly.

I'm thinking of how hard it must be for single people, especially widowed elderly people, to go through something like this alone, without the support of a SO, or of someone who could assume a similar care-giving role.

 

[Spinner]

To know that I will one day get to be the recipient of some well-deserved Lee-snark is the best news ever!

 

[Spun Silver]

And you by her side for each step of the journey.

That's got to be a huge plus that will help her to recover more quickly.

I'm thinking of how hard it must be for single people, especially widowed elderly people, to go through something like this alone, without the support of a SO, or of someone who could assume a similar care-giving role.

Yeah... and a lot of us caregiving spouses know that our impaired mates would not be able to give the same kind of care to us if we needed it. So we pray we never need it and tell each other how important it is to take care of ourselves.

 

[once_upon]

@Gerry, I sent Lee a package at the school address. I hope it gets there. The US customs form - I had to fill out three different times and answer repeatedly that it wasn't flammable or on the banned list.
I kept thinking banned substances, just like ice skating.

 

[Aceon6]

Time for another bump. Gotta keep one of our favorite gals on page one!

 

[emason]

Continuing to send good wishes and prayers. All the best for 2017.

 

[Gerry]

Good morning... I haven't posted since Monday, so I thought I should give an update.

Its been a quiet week; Lee continues to recover physically, but continues to be quite tired. Lord, that woman can sleep!

She was able to sit and balance by herself on Tuesday (I was sick and stayed away, but our son came up to visit after work and saw her with the physio team). They tried standing her up, but she couldn't quite hack that. He said she looked pleased with herself.

But that pooped her out and she slept a bunch on Wednesday and Thursday. She is more awake today, but I'm letting her have another 'down' day because our daughter is coming up with grandkids tomorrow. I want her awake for them.

On the advice of some posters here, I am slowly talking about past events, old friends, reading posts from many of you and asking a few questions about you.. all very low key and letting her choose to respond or duck.. cognitively, she seems to be doing well, and is reindexing her database a bit at a time.

Other advice led me to talk with the nutritionist about her feeding; she was pretty receptive and is off putting together some ideas for how we can proceed.

Her neurosurgeon showed me the results of her last MRI and CT.. the physical damage seems to be clearing up, and her brain is apparently healing well. As he put it, "I'm running out of fixable things"...

She sort-of failed a swallow test on Wednesday... probably out of practice, possibly because she was sleepy, but the speech pathologist is going to keep coming back to work with her on that. The alternative is a PEG tube, since the NG tube she has now has its own set of issues.

We've had visitors, friends and colleagues drop in, and she enjoys those times.

She thinks a lot. I can't imagine her trying to reconcile all the little pieces.

Thanks for your continued thoughts, prayers and support... as was stated earlier, going through this alone would be incredibly difficult. We have never felt like we were alone.

More to come...

 

[barbarafan]

Good morning... I haven't posted since Monday, so I thought I should give an update.

Its been a quiet week; Lee continues to recover physically, but continues to be quite tired. Lord, that woman can sleep!

She was able to sit and balance by herself on Tuesday (I was sick and stayed away, but our son came up to visit after work and saw her with the physio team). They tried standing her up, but she couldn't quite hack that. He said she looked pleased with herself.

But that pooped her out and she slept a bunch on Wednesday and Thursday. She is more awake today, but I'm letting her have another 'down' day because our daughter is coming up with grandkids tomorrow. I want her awake for them.

On the advice of some posters here, I am slowly talking about past events, old friends, reading posts from many of you and asking a few questions about you.. all very low key and letting her choose to respond or duck.. cognitively, she seems to be doing well, and is reindexing her database a bit at a time.

Other advise led me to talk with the nutritionist about her feeding; she was pretty receptive and is off putting together some ideas for how we can proceed.

Her neurosurgeon showed me the results of her last MRI and CT.. the physical damage seems to be clearing up, and her brain is apparently healing well. As he put it, "I'm running out of fixable things"...

She sort-of failed a swallow test on Wednesday... probably out of practice, possibly because she was sleepy, but the speech pathologist is going to keep coming back to work with her on that. The alternative is a PEG tube, since the NG tube she has now has its own set of issues.

We've had visitors, friends and colleagues drop in, and she enjoys those times.

She thinks a lot. I can't imagine her trying to reconcile all the little pieces.

Thanks for your continued thoughts, prayers and support... as was stated earlier, going through this alone would be incredibly difficult. We have never felt like we were alone.

More to come...

Thank-you for the update..Sleeping is great..That is when the healing occurs . So glad you providing the stimulation as well..You r relieved but u can bet she is as well..She might not be vocalizing all of her fears but the gears are turning..and that is exhausting but therapeutic at the same time...Wouldn't worry about the watery knees with all she has been through..I just recently was put to sleep to replace dislocated shoulder- 3 times in 2 days. the second time on day 1 when they told me it was ok to get up my legs were wobbly and I had to lie down for another half hour. I can imagine after what she has been through..Each time out will be better than the time b4.

 

[skatesindreams]

I am slowly talking about past events, old friends, reading posts from many of you and asking a few questions about you.. all very low key and letting her choose to respond or duck.. cognitively, she seems to be doing well, and is reindexing her database a bit at a time.

She thinks a lot. I can't imagine her trying to reconcile all the little pieces.

I'm glad to hear this.
It's an ongoing process; and at times frustrating, I'm sure.

Recovering her physical strength will take time; and the coordinated efforts of her physio team to discover the approach which is best for Lee.
I've been there.

My thoughts and support continue.

 

[4rkidz]

we had to teach my dad how to talk, walk and eat. He also lost a lot of weight so in the end my mom let him eat what he wanted (he wouldn't eat hospital food) but he would eat rice pudding and chips (french fries) - but he would try and feed himself but completely miss his mouth - it took a while but his brain re learned everything but yes a very tiring process. Actually even when he was home my mom would plan social events to include a rest day before as I think that is the last thing (energy) to come back. Patience is so hard and coming to terms with the 'new' normal. In retrospect though its a pretty amazing journey, that I know many of us have been through.

 

[Spun Silver]

I remember that the swallowing took a long time. He had to eat and drink mush before he could drink liquids. PEG tubes sound worse than they are. My husband had one when he came home from the hospital after a different medical crisis, but he didn't use it for long. It had to stay in for weeks unused just because of the time it took for the tissue to heal.

How are YOU holding up, @Gerry? You are such a rock.

 

[FreeAgent]

Slowly but surely, baby steps, hard work and patience... All cliché but all true. God is good Gerry take heart and we're with you.

 

[Jayar]

I am so encouraged by everything that you are sharing @Gerry. Glad that she is healing, and am looking forward to her first post back on FSU! It will be well worth the wait

 

[mysticchic]

Great news! Let her sleep. I am sure she is trying to figure out what happened and is scared. I couldn't drink anything without a slushy stuff put in it. But the 2nd day I asked for a coke and it was the best coke I ever had!
With legs, since she hasn't used them for weeks, it will take time for the muscle tone to come back. It took me about a week.
Gerry get some rest, but also don't overload her with visitors. She needs time to figure out in her brain what happened to her.

 

[once_upon]

@Gerry - I don't know if Canada has Speech Pathologists that specialize in feeding, but I used to work extensively with Feeding and Swallowing SPs for pediatric patients. They are specialty all of their own and successfully took kids who had been tube fed since birth to swallowing and eating. They had the added benefit of assisting with speech too.

 

[Gerry]

@Gerry - I don't know if Canada has Speech Pathologists that specialize in feeding, but I used to work extensively with Feeding and Swallowing SPs for pediatric patients. They are specialty all of their own and successfully took kids who had been tube fed since birth to swallowing and eating. They had the added benefit of assisting with speech too.

Yes, we do. That's who is working with her on that part. She said Lee did pretty good with the thicker stuff but wasn't quite ready for thinner liquids like water, so they're going to practice for another week or two, then repeat the testing.

She thinks it isn't far off.

 

[Skate Talker]

Thanks for the updates,@Gerry. So much sounds so familiar. In a strange way, your unfortunate situation has been helpful to me in reminding me how lucky we were too and how much we accomplished together as a family.

I had forgotten all these stages of recovery, the small improvements, the concerns over things that didn't seem to be coming back, and like you, the constant sleeping. In our case, since my father had been in a coma for so many weeks, I was often afraid while he slept, thinking he might not wake up again. Ever so slowly it became clear he was becoming more wakeful. After that, most days brought surprises at what was coming back, and what was not. In other areas progress seemed to stall and we took him home with a prognosis that we would not likely see much further improvement. That was very wrong - progress was slower, but still apparent for quite some time after. The experience changed me too. I definitely developed more patience, and more empathy. From your posts I can see you are already way ahead in that department. Best wishes to you both.

 

[Garden Kitty]

I'm sure the progress can seem slow and sometimes frustrating, but each of your posts tells of new accomplishments and I'm so glad she's moving in the right direction. You and Really remain in my prayers and thoughts.

 

[Skittl1321]

These updates sound wonderful.

Sleep is definitely part of healing. I have very little memory of my ICU time after I broke my neck, I slept so much, and even months after I got home I would need frequent naps just from easy daily activities. Plus I think it is just frustrating when you can't hold a fork, tie your shoes, or press a remote button hard enough to change a channel, so the body exhausts itself.

 

[Spun Silver]

A retired doctor friend of mine used to say the body is working terribly hard to heal itself, and that is why one feels so much fatigue.

 

[KCC]

Continuing to send my hopes, prayers and encouragement. Thank you for taking such good care of Lee, and for keeping us informed of her progress.

By any chance, are you keeping a personal record of her recovery (other than emails and messages here)? I don't know if it would ever be useful medically, but I wish I kept a diary of my treatment and progress during past medical issues. The doctors have their notes, so a record does exist, but sometimes it helps to have something handy to reference.