Really

[AnnM]

I'm so glad to hear of all the progress Lee has made! Thank you for taking the time to update us Gerry.

 

[skatingfan5]

Adding my to those already posted at the great update on Lee's progress -- thank you @Gerry for all the reports.

 

[MINAM]

YES! YES! YESSSSSSSSS!

 

[VALuvsMKwan]

Echoing the relief and happiness we all feel from this wonderful news. Thank you again, Gerry, for being kind enough to let us all know how Lee is doing.

 

[Simone411]

What awesome news! I'm so happy for Lee and you, @Gerry It's wonderful that she's out of ICU. Keeping Lee and you in my thoughts and prayers as I know there's still a long way to go. With each and every day, Lee will get stronger, and I'm so glad that the nurses and doctors are involving you and keeping you in the loop of things.

Thank you so much for keeping all of us informed about Lee's progress. God bless! <3

 

[HeatherC]

SO happy to see some good news about Lee! Thank you so much @Gerry for all the updates and you all continue to be in my thoughts and prayers. Yay!

 

[4rkidz]

Wonderful news @Gerry, I remember with my dad the progress after ICU was two steps forward one step back, many times reminding each other how far he had come when progress stalled. One really good energy day would leave to being exhausted the next day. Good luck with your journey, one day at a time.

 

[Lorac]

Thank you for the update. Lee has taken a big step and that is fabulous to hear. And keep doing the 'field' trips

 

[FreeAgent]

That is such marvelous news and such blessing!!! I pray that everyday add new ones and I join everyone her in sending you warm, positive and comforting thoughts and virtual hugs.

 

[Yazmeen]

Happy, happy, joy, joy, this is good news!

 

[rfisher]

Probably not going to be an issue... this might surprise you, but I'm not real high on the shrinking violet scale..

The nurses and doctors have been really good about involving me; keeping me in the loop on the front end is easier than dealing with me later...

You are her best advocate at the moment. Educate yourself, but don't spend too much time Googling stuff. I speak from experience. But, the more you understand, the quicker you can determine if there is a change. And, if at all possible, someone should stay with her as much as possible. The ICU doesn't require family to be there, but being on the floor does, especially if the patient cannot speak for themselves. I know the nurses and doctors on FSU will agree with me that things happen everyday that shouldn't. Plus, you are the constant between shift changes and staff rotations, even though they give report, not all caregivers are equal. Pace yourself and divide the time between friends and family as much as possible.

 

[Spun Silver]

I was thankful that my husband was only on the general floor for a couple days before going to acute rehab. The lower level of care was nerve-wracking. Once he was in acute rehab, it was back to close supervision in an enclosed area. Are they talking about rehab for Lee yet?

 

[Gerry]

I was thankful that my husband was only on the general floor for a couple days before going to acute rehab. The lower level of care was nerve-wracking. Once he was in acute rehab, it was back to close supervision in an enclosed area. Are they talking about rehab for Lee yet?

The good part here is, she isn't in a general ward. It's still a Neuro ward... a transition between ICU and wherever she goes next. That means the nurses are all Neuro-Trained, there are always specialists on the ward, and all of the Neuro wards are adjacent to Neuro-ICU, where the Residents, Respiratory Techs, etc hang out.

Still, I am there every morning before night shift ends, to see how it went. I'm there all day, until an hour after the new night shift starts; I use that time to make sure the new Nurse understands Lee... That means 15 hrs at her bedside every day, but I've been doing that since the beginning, and will continue until we have a better handle on what's next, and until she can speak for herself.

Each charge nurse has my cell phone number and instructions to call me if there is a need.

I'm well-versed in this, from a medical standpoint, and ask a lot of the right questions, in the right contexts. The flip side is, I appreciate good care, I help out, and I thank everyone for what they do for Lee.

Right now, they are assessing her to determine next steps... I'm waiting to see what they suggest for rehab.. I have some small background and a few connections in that area, also, so perhaps I can augment their thinking.

 

[emason]

Gerry,

Continued hugs to you and Lee. Thanks for the update.

 

[Spun Silver]

You are amazing. When I said general floor I meant general neuro floor. It was right next door to the neuro ICU but there was a big difference in atmosphere and staffing levels. I am glad you feel Lee is getting good care there and I dont doubt your watchful presence has a great deal to do with that.

I am still worried about you. This is not sustainable. But you sound like a Special Forces Ranger or the Canadian equivalent: "You're never cold, you're never hungry, you're never tired." God bless you! http://www.nationalreview.com/artic...castro-special-forces-jay-nordlinger-new-book

 

[Gerry]

Ah, sorry... I misread that. Yeah, the intensity is down, no question... I would have gone nuts here if Lee had arrived here when she was still unstable. However, she's (physically) pretty stable right now.

This is Canada's #1 Neuro Program, according to CNSA. A big part of that is the amount of cross-training that goes on here... I keep seeing my ICU nurses on float or in charge roles in the high-intensity and recovery wards. I think there is a LOT of cross-over here, but still, ICU is a one-per-one, team-based approach, where this ward is a one-per-4 ratio. The ICU care is augmented by realtime remote monitoring, and this isn't ... in fact, that's the first thing I noticed after the move... even though I knew Lee didn't need comprehensive monitoring any more, I still felt somehow naked without it!

I'm watching closely, and your cautions are well-taken. Still, so far, so good.

As for JTF-2 (the Canadian Equivalent), no, I just am what I have to be ... what Lee needs me to be, right now. Later, when this is over, I'm gonna curl up in a corner for a few days.

 

[Spun Silver]

A few days! It took me months and months to feel like I got my life back. But like I said, you are AMAZING!

PS: Thanks for the word about JTF2. Very impressive Wiki entry!

Also: How wonderful that she is in the best facility in the country! That must be a huge comfort even though they still need you to keep them on their toes. My hubby was in good places... arguably the best for his acute rehab, but otherwise high second tier, I'd say, but they were good enough. (If he had been at the very best I would not have been able to spend as much time with him, and that would have cancelled out the medical gains.) So much of the recovery is driven more by the patient (and his or her family) than the therapists or doctors once the emergency phase has passed.

 

[rfisher]

@Gerry, you are doing great. I've also learned that occasional treats make the nursing staff take extra care. It's just human nature. As a CT technologist we always went the extra mile for the doctor who brought us treats and by extension to their patients. Plus, they do work hard and they really do appreciate when family helps. I brought two dozen bagels to the interventional radiology techs, nurses and docs just yesterday because all I have to do is call them to schedule my son for anything. I don't have to call my doc or admissions...just the IR department.

Any type of neurological insult is a long process and you quickly fall into the routine. One suggestion, if you get to know the respiratory techs, ask them to teach you how to suction. It's not that difficult, albeit it's a little intimidating the first time. Hopefully, you'd never need to, but if you did, you'd know what to do quickly.

It's amazing how quickly your normal can change. One challenge you will face along with Lee is her frustration. As she heals, it will increase when she tries to do something and can't the first time. All those years of teaching will be your friend.

 

[skatesindreams]

Gerry, I'm glad that you have the background to understand and appreciate what is happening.
It will be useful and important in the weeks ahead.

Thank you, for sharing the details with us.

 

[Gerry]

@Gerry, you are doing great. I've also learned that occasional treats make the nursing staff take extra care. It's just human nature. As a CT technologist we always went the extra mile for the doctor who brought us treats and by extension to their patients. Plus, they do work hard and they really do appreciate when family helps. I brought two dozen bagels to the interventional radiology techs, nurses and docs just yesterday because all I have to do is call them to schedule my son for anything. I don't have to call my doc or admissions...just the IR department.

Yep. 'Will work for cookies' is a Universal Slogan. We always had a few parents who would drop off some baking at the staff room every so often. I loved them, even when little Johnny was being a tool...

So you're one of the Polaroid people? Nice! I have SO appreciated the role of DI in understanding what's happening with Lee. It's incredible to me just how much a Doc can learn about 'what is happening in there' through CT scans, Angiography, and ultrasound. It's not like they can lift the hood and have a look around...

Any type of neurological insult is a long process and you quickly fall into the routine. One suggestion, if you get to know the respiratory techs, ask them to teach you how to suction. It's not that difficult, albeit it's a little intimidating the first time. Hopefully, you'd never need to, but if you did, you'd know what to do quickly.

Thanks... been there already! The RTs and I got along great.. and I learned to suction on about Day 3, for the reasons you describe... especially when she was wearing a T-tube.

But new news... she got decanulated 10 minutes ago... the last of the BORG hardware has been removed!! (They pulled her trache out)

We won't get as many RT visits now. :-(

It's amazing how quickly your normal can change. One challenge you will face along with Lee is her furstration. As she heals, it will increase when she tries to do something and can't the first time. All those years of teaching will be your friend.

I'm up for it. Thanks for the tips... don't stop. We know this is going to be a long journey, and I'm keenly aware that as much as I think I already know about this, what I actually DO know is dwarfed by what I don't.

That goes for everybody... any suggestions or insights do nothing but enrich us. We appreciate the help.

 

[rfisher]

Well, one thing is that nobody really knows what will happen with a neurological boo boo. An excellent neurosurgeon once told me that he could do what he could do, but the results were always unpredictable to a certain extent. Two people with the same injury can have very different outcomes. He also told me there is sexy medicine and the mundane. The sexy medicine is the acute stage. The surgeons, the interventional radiologists, even the ICU team are all focused and on high alert. They can make immediate changes. It's what they like to do. The mundane is the long slog of rehab which takes months and to be honest, years. The problem both the patient and family encounters is the medical teams, and in the US, insurance people want to assign numbers. X has to happen by this time period. Well, it doesn't always work that way. Some changes may happen quickly; some may be incremental. Secondary health issues come along that are tangentially related. You are now the case manager, and I can assure you, you'll be better at it than any who is assigned to you. You will learn all about speech therapy, OT and PT. And when they start thinking about nutrition, you'll be there when they assess swallowing and so forth. When you get there, if they decide they need to do enteral nutrition for a time, I'll give you much better information sources than you'll get from the dieticians. There is a huge controversy about nutrition and the companies which control most of the products in the US and Canada. You can then make a better informed decision. Just because the hospital recommends something doesn't mean it's the best option by a long shot. You'll shortly begin to encounter what I teach my students as the politics of medicine. There are ways to navigate. I learn something new almost every day.

Yes, the advances in medical imaging are really amazing. CT and interventional radiology are changing so rapidly, it's actually difficult for those in the field to keep up, especially interventional. We can do things now, we couldn't do even 15 years ago, such as the coils they probably used to stop the arterial bleeds. I remember when those were cutting edge and only done at major research centers and now they are almost routine. Patient outcomes are so much better as a result.

 

[skatesindreams]

Seconding what rfisher said!

 

[Simone411]

Thanks so much for the latest information, @Gerry

It's wonderful news about them removing the trache. I've been keeping Lee in my prayers regarding several things and it sounds like she's doing amazingly well. I stayed in ICU for about 3 weeks before they moved me to the 7th floor. During the first two weeks of being in ICU, I was in an induced coma. Of course, my circumstances were much different than Lee's.

I ended up with DVT in my good leg about 3 days after I was out of the coma. An extreme blood clot had formed even though they used a compression device that looked like a cuff around my leg. That was one of my worst fears regarding Lee and being bedridden for so long. I'm pretty sure that her doctors and nurses have been looking out for that.

Still keeping you and Lee in my thoughts and prayers. <3

 

[Kasey]

@Gerry , just because the trach is out, doesn't mean no more RT! (she still may be prone to plugs, and in need of treatments, just to keep secretions loose enough to handle).

I've done critical care for 15 years of my 21 years in nursing, and I can tell you, there is no better feeling than seeing a "great save" like Lee get better and LEAVE your unit! I know that she is making many hearts happy with all of her progress, not just her family and friends. And I am incredibly grateful for all of your updates, and knowing that this beautiful and kind lady is getting stronger every day. Thank you so much!

 

[Jayar]

I come here every day, hope for more good news, and I have been walking away from the updates with a smile on my face these days. So, I know that there is a lot of work that still needs to be done, and that our girl has a ways to go, but I am just so happy I hope that she is able to start really talking soon, and that she moves on to the next phase of her recovery sooner than later. We all know that Miss Lee is an overachiever, right?

 

[Skate Talker]

Yes, thanks for the updates, Gerry. Great news about the trach and I like your Borg analogy (as I sit here watching an episode of the original Star Trek).

rfisher is so right about how each patient can be so very different. My father certainly did not follow what was the accepted path when recovering from his ruptured cerebral aneurysm some 2 decades ago. The hospital caregivers met with us prior to his discharge from rehab and fed us a load of hogwash about the limits of his recovery. Fortunately there was one lower-ranking member of the team who privately gave us a heads up, and some helpful mental exercises to work on at home. We ourselves had already experienced my father exceeding the head doctor's prognosis. I think I actually have a tape of the meeting somewhere around. At the time, some family members were out of the country and I could not rely on remembering everything to share with them. I would be interesting to review to see just how off the mark they were.

We also had to fight against ageism in the system. Since my father was retired, thankfully had no speech or one-sided weakness issues, and a family to go home to, he was put so low on the mental assessment/therapy waiting list they told us it was unlikely he would ever get called in. He wasn't even 70 yet but they had written him off as non-productive and not worth the money. Hopefully thinking and resources have evolved beyond that now. Truly a false economy if the person could have been made more independent in any way.

Anyway, feel more than free to bounce questions or ideas off of us, or even just to vent. Everyone needs a safety valve with this amount of stress and uncertainty. Having someone to listen was very theraputic for me to be sure.

 

[SHARPIE]

@Gerry you are amazing - much love with you.

 

[mysticchic]

Glad to hear the good news!! It's going to be a long road ahead. It's almost been a year for me. You have to find the right PT, OT and neuro. It took me 6 months. But she has a good advocate in you.

 

[once_upon]

Like the other healthcare personnel here I am thrilled with Lee's progress. I know there will be frustrating long days ahead, but know that you are I'm the best place.

I sent a card of thanks to the staff. Care staff are often overlooked when the miracle of healing happen. But it is theirs hands eyes and touch that makes those miracles happen

 

[Gerry]

Today is Christmas Eve, 2016. As I made my pre-dawn delivery of cookies and gift cards to the nursing station stations in the ICU and Recovery wards, I was again Struck by how much we owe these people, we have depended on them for all of the 'little bits' of care that makeup every day, for the monitoring and observation that ensures a tomorrow, and for the sometimes-heroic efforts to keep us together.

Now as I sit beside my quietly-sleeping wife, I look at her and can easily imagine that this has all been a dream, that her face, so peaceful in repose, will suddenly wake up to animate my day, just like it has every day for the last 35 years.

But when she awakes, I will be reminded that we are starting a new life together, that in a sense, tomorrow will be our first Christmas, and that miracles really do happen, even to ordinary people like us.

It strikes me that the 'important things' in our lives... the things making up the news every day,the highlight reels of the media, are irrelevant when compared to the precious moments that define us... and that, in the final analysis, losing one of those matters immensely. Everything else is allegory.

Thanks to all of you, and our many colleagues and friends, for the support and prayers over the past month... I have hope that Lee will eventually return to full health, but even if we emerge from this unscathed, we will forever be changed by it.

Wishing you well this first Christmas Eve morning.