Really, part deux

mysticchic

Well-Known Member
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6,466
Sending more prayers and a huge hug for both of you!! She is so lucky to have you. The brain messes with so many systems of the body.
 

barbarafan

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4,648
Well it's Saturday. Day 94. Over the past week, she seems to be healing well, but we have other complications... electrolyte balance and fluid management, edema, then respiratory issues today.

I'm starting to think she likes it here.

Nothing is ever easy.
That totally sucks...unfortunately one thing sometimes leads to another as our body systems are designed to work hand in hand with each other when one is not pulling it's weight completely it causes problems somewhere else..ie..if you are not moving around enough your lungs don't like it...and there are so many causes for edema. Good thing she is where she is so they can get everything adjusted for her. She must be so frustrated at this point. When you are used to being active and doing for others it is very hard to have to accept that for the time being you have to hand the reins over to others.
 

skatesindreams

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30,265
My thoughts continue to be with both of you.
We are grateful for your updates.

I hope that these "complications" are only temporary "bumps in the road" for Lee.
 

Finnice

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8,587
Sending healing vibes from Finland to @Lee. @Gerry, remember that you don't need to be strong all the time. You can be angry, frustrated annd weak. Take care of yourself!
 

Gerry

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160
Thanks guys. Yesterday, Lee flirted with acute pulmonary edema for much of the day; it wasn't any fun at all, but once the docs got her fluid balance and osmolarity stabilized, she settled down and slept pretty well. Today, she sounds and looks a lot better... she is still tired, but is no longer in distress.

The thing I like about being here is that the nurses can reach out for all kinds of assistance and expertise so easily... as Lee's condition changed yesterday, doctors from the Kidney team, pulmonary team, hematology team all showed up in turn, supported by respiratory therapists, diagnostic imaging people, lab guys, etc. The lead resident on her surgery team and the senior neuro resident came by as well.

This is a big hospital... that many resources diverting to make sure their patient was OK just made me gawk.

I shouldn't be surprised... since this first began, people have been consistently making the right moves. In small hospitals and large ones; in ambulances, emergency rooms, ICU, and on the wards; everyone has contributed to Lee's recovery. We are humbled by the dedication and professionalism we have experienced at every stage, and hoping that we are finally on track to make the long journey back to normalcy.

And as always, we cherish the support of our friends. Have a nice Sunday with your loved ones!
 

mysticchic

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6,466
It's good that you are in a hospital were they have all the specialist right there. Tell her I said hi and give her a big hug from me!!
 

Spun Silver

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11,581
Thanks so much for keeping us up to date, @Gerry. Glad to hear the crisis has passed and Lee is doing better.

It is good that you guys are surrounded by medical experts of all kinds. In fact, when my husband was ready to leave the hospital and go into the first stage of rehab (called acute rehab here), I chose the one that was housed right smack in the middle of one of NYC's top hospitals specifically so that if ANY of his health issues kicked up (he had been previously hospitalized that same year for heart problems), he would get immediate help. He had a problem similar to Lee's where what was good for his heart was bad for his brain and vice versa, so the different doctors and nurses needed to work together. I looked at another top hospital's acute rehab program too, but it was housed 15 minutes away from the main hospital in good traffic. That hospital was near the UN, so bad traffic was frequent! I wasn't comfortable with that.

Wishing you both many successive steps forward and no reverses!
 

halffull

Life is a beautiful thing
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4,665
Glad Lee is in such a great hospital and that it gives you some comfort, Gerry. Really hoping that things start to move more smoothly forward for you all soon. These bumps along the road are to be expected I guess, but I'm sure they are stressful which is that last thing you all need. Sending positive vibes & healing hugs :)
 

NeilJLeonard

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4,252
Well it's Saturday. Day 94. Over the past week, she seems to be healing well, but we have other complications... electrolyte balance and fluid management, edema, then respiratory issues today.

I'm starting to think she likes it here.

Nothing is ever easy.
......TRUE...:cool:

It is going to be difficult. You knew that. Keep your sunny side up. You are handling it all very well and she's getting better. Well done, Gerry. Keep up the good work...:respec:
 

Gerry

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160
Today was Day 99. Wow.

Gerry took a day off today; needed to catch up on paying bills, taxes, and all the other mundane stuff. I thoought it would be good to disconnect a little, but all I've done all day is think about Lee.

Lee was supposed to be transferred today (back to our small town hospital) but the process hit a few snags, as they worked to find the best medical alternative for her. She is currently on a post-surgical ward, and needs to move to general care; they would like to get her into a neuro-recovery setting, but either those have no openings right now, or she isn't ready for them.

So general care it is .. their question is, do we move her back to our little hospital, or to another city centre, where she might be more easily moved to a neuro-recovery ward?

There are pros and cons to both sides. For the most part, she needs general care right now, a chance to recuperate and grow more medically stable; a chance to put more days between her and her last operation and work on getting stronger. She certainly gets good care in our home facility, and her friends can stop by more easily, but there is comfort in knowing that all the specialties are in the building in a bigger centre.

I asked Lee last night what she wanted, and she said 'Really, I just want to go home.' I had to tell her again that wasn't one of the options...

I'm going to have a chat with our doctor in the morning to get his perspective. I think I'm over-thinking this.

Wouldn't be the first time.
 

rfisher

Let the skating begin
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62,168
@Gerry are there any options available for home care? It's amazing that she hasn't picked up a hospital acquired bug by this point. She really would recover better at home, but she'd need a nurse with her and monitoring. It's always a balance between getting them out of the hospital ASAP and keeping them close. Right now, you're a wee bit apprehensive about taking her away from the full service facility after her set back. Which is understandable.
 

Aceon6

Isolating from mean people
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20,190
@Gerry As long as the caregivers are competent and talking to each other, it sounds like both places work. Whatever puts the least stress on Lee might be best.
 

Gerry

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160
@Gerry are there any options available for home care? It's amazing that she hasn't picked up a hospital acquired bug by this point. She really would recover better at home, but she'd need a nurse with her and monitoring. It's always a balance between getting them out of the hospital ASAP and keeping them close. Right now, you're a wee bit apprehensive about taking her away from the full service facility after her set back. Which is understandable.
Unfortunately, full-time home care is a little off the radar. I'm actually comfortable with her back in our little hospital, now... after the dance with PE the other day, she has been pretty stable, and there really isn't too much else that can go wrong, right now. Circumstances have spared her the dubious joys of adult appendicitis, for instance.

Mobility continues to be an issue... She still isn't moving around with any degree of fluency, the strength just isn't there, yet. A normal adult would have handled her last surgery fairly well, and would be thinking about walking out one of these days soon. Lee didn't go into that surgery in any normal state of health, so the impact on her physical baseline was profound... several steps backwards. She is coming along really well, but she still isn't quite where she was at the first time they repatriated her.

I'm trying to figure out how the next steps unfold to get her into a holistic therapy program... and choose the best path to get her there. The best program around here doesn't much like medically unstable participants - PICC lines, NG tubes etc sort of make them nervous. I don't think a few weeks of supportive care here will hurt things at all, but maybe being in the bigger city hospital would accelerate that a bit.

Maybe what I need to decide is if the pace NEEDS to be accelerated...
 

barbarafan

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4,648
Unfortunately, full-time home care is a little off the radar. I'm actually comfortable with her back in our little hospital, now... after the dance with PE the other day, she has been pretty stable, and there really isn't too much else that can go wrong, right now. Circumstances have spared her the dubious joys of adult appendicitis, for instance.

Mobility continues to be an issue... She still isn't moving around with any degree of fluency, the strength just isn't there, yet. A normal adult would have handled her last surgery fairly well, and would be thinking about walking out one of these days soon. Lee didn't go into that surgery in any normal state of health, so the impact on her physical baseline was profound... several steps backwards. She is coming along really well, but she still isn't quite where she was at the first time they repatriated her.

I'm trying to figure out how the next steps unfold to get her into a holistic therapy program... and choose the best path to get her there. The best program around here doesn't much like medically unstable participants - PICC lines, NG tubes etc sort of make them nervous. I don't think a few weeks of supportive care here will hurt things at all, but maybe being in the bigger city hospital would accelerate that a bit.

Maybe what I need to decide is if the pace NEEDS to be accelerated...
Very good point Gerry. Her body needs to recover. We only have x amount of reserves. On the other hand if she does not move around enough she could have other problems. Maybe the answer is for the next little while to have a lot of movement done to her in her bed so her innards get the movement it needs and less of where she has to push herself and empty the tank. Sometimes less is more. I know she is all connected to bells and whistles now and has to watch for infection but when she is further along maybe hydrotherapy would help. I am going twice a week and I can do double with my trashed arm in the water than regular physio.It is so much less invasive..They also have spec. chairs which are lowered into the pool and the person is strapped in the chair. I have never seen it being used so I do not know anything more about it. Hope your discussion with her doctor provides good solution..I totally get how Lee feels about home...Just to sink into lots of fluffy pillows and comforters and to be alone in a room and comfy in your environment. That is something to fight for but it is so important to build up her reserves so she has gas in the tank for the next round.
 

Spun Silver

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11,581
Whichever will get her to the neuro-recovery place more smoothly sounds best IMO. That place is going to give her all kinds of slow, tedious therapy that she desperately needs. If she is anything like my husband, the better she gets, the more she will hate being there... but that therapy is incredibly important and the places are (or should be) safe, even if (as happened with my husband) they had to put a guard rail on his bed, alarms under his chair seat, and strap him into a wheelchair (with my permission) because he was such a high fall risk.

Sadly, a patient wanting to go home doesn't mean they are ready to go home. And as hard as things have been for you up to now, @Gerry, they will be twice as hard when she is home and you are responsible for almost everything--her safety and all her therapies and medical care--without a medical team on-site to help.

But of course, you know best. After the ICU, you really do. There aren't any perfect decisions -- just more or less livable, helpful and safe ones for both her and you. When I was in your position, I was bringing hubby back to our home in NJ after two months in NYC hospitals. The NYC people knew absolutely nothing about NJ so I was totally on my own. By then I had enough knowledge to know what questions to ask and make a good choice, and I know you do too.
 

overedge

G.O.A.T.
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27,485
@Gerry thank you for the update, and for being so thoughtful about these decisions. There might not be a choice that is perfect, but your thinking through the pros and cons will help you choose whatever is most workable. And you also will know what else is possible if the choice doesn't turn out to be optimal. ((hugs)) to you and Lee.
 

rfisher

Let the skating begin
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62,168
Maybe what I need to decide is if the pace NEEDS to be accelerated...
And there in lies the dilemma of long term recovery. Hospitals do their best to prevent the spread of infectious organisms, but most don't. There is a point where extended stays become a race against contacting something you really don't want. But, sometimes the patient needs the support. Home care is difficult. Equipment is expensive. But, Lee's recovery will occur at her own pace regardless. At least being "closer" to home will make it easier for her friends to stop by and for you. Other than that it's one day at a time. A good day is one with no new problems.
 

LilJen

Reaching out with my hand sensitively
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12,877
(((Gerry))) I don't envy you having to make these tough decisions. Wishing I could snap my fingers and you and Lee would be home and well again. I continue to pray for her healing and your endurance.
 

skatesindreams

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30,265
Whichever will get her to the neuro-recovery place more smoothly sounds best IMO. That place is going to give her all kinds of slow, tedious therapy that she desperately needs. If she is anything like my husband, the better she gets, the more she will hate being there... but that therapy is incredibly important and the places are (or should be) safe, even if (as happened with my husband) they had to put a guard rail on his bed, alarms under his chair seat, and strap him into a wheelchair (with my permission) because he was such a high fall risk.

Sadly, a patient wanting to go home doesn't mean they are ready to go home. And as hard as things have been for you up to now, @Gerry, they will be twice as hard when she is home and you are responsible for almost everything--her safety and all her therapies and medical care--without a medical team on-site to help.
This speaks for me.

From what you've shared, Lee isn't quite stable/strong enough to be at home, yet,
IMO, she needs to be where she can regain her strength, have monitored supportive care; and in case of problems, have rapid access to critical care while she waits for the placement in the rehabilitation facility.
The goal is to give Lee the opportunity for the best possible recovery.

Finding that balance is never easy.
However, I'm sure that you will.
You, and the experts involved; have done wonderfully, thus far.
 

Gerry

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Messages
160
Day 100 ... that's a special thing for Elementary Math teachers...

I met with Lee's Doctor (here) this morning... he agreed with pretty much everything that's been said, and indicated that he felt it would be best to move her back to our local hospital, so she could be cared for while she continued to regain her strength. He also got all over my case about taking care of myself, because my job was far from over, and insisted that I call him if I needed help. Have you guys been talking to him?

Anyway, he obviously got busy making the move happen, because when I went over to the Hospital to check in with a few of Lee's needs, the nurses already knew and were very happy to have her coming back. They were busy arranging her room, bed, and equipment to make sure everything was ready for her.

After I got home, I got a call from the post-surgery ward in Edmonton, letting me know that Lee was on the transfer list and that the doctors had all spoken with each other. Lee's nurse said she is looking good today, and was in good spirits about the move. She has been with Lee a few times on this evolution, and has a good idea of whether she is improving or not, so I was encouraged by that. I feel guilty about coming home to get some things done; it's only been a day, but I've only missed being with her 2 days since this began, and I'm apparently not used to being alone.

In any case, she should get here later today, assuming transport is readily available.

I am not going to miss staying away from home, eating out of microwave, city traffic and parking, or days on end in the big concrete box. I am going to miss the people who cared for Lee; they did remarkable work under considerable pressure, and showed great compassion and professionalism in being there for Lee when she needed them. I salute all of you health-care people!

More to come ...
 

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