Positive thoughts please-ups and downs p.42

[Dan Murphy]

Wonderful news, Kim! Diagnosis, treatment, home. Great!

 

[Planogirl]

This is fabulous! I hope that you are resting easy right now. This has to be such a relief!

 

[jerseygal]

That is great news! Hope that Richard gets released soon and continues to get strong!

 

[kimblebee]

This is fabulous! I hope that you are resting easy right now. This has to be such a relief!

You’d think I’d be sleeping better, but no. I did have a few naps yesterday afternoon/evening and when I went to bed for the night I only slept for about 3 hours. I’ve lined up visitors for Richard today so I am taking a pj day to just sit and catch my breath. Also, I have to catch up on a bit of laundry and the kitchen is pretty dirty. I’ve been eating and just leaving dishes in the sink.

He is able to use the phone by himself now so we’ll be texting through the day.

I really miss him being home..

 

[ronandannette]

You’d think I’d be sleeping better, but no. I did have a few naps yesterday afternoon/evening and when I went to bed for the night I only slept for about 3 hours. I’ve lined up visitors for Richard today so I am taking a pj day to just sit and catch my breath. Also, I have to catch up on a bit of laundry and the kitchen is pretty dirty. I’ve been eating and just leaving dishes in the sink.

He is able to use the phone by himself now so we’ll be texting through the day.

I really miss him being home..

Hang in there - by your account he will be back soon and probably being a little "higher maintenance" than normal while he recuperates. Between that and preparing for the holidays you'll have quite a bit on your plate. Wishing you both well.

 

[kimblebee]

Hang in there - by your account he will be back soon and probably being a little "higher maintenance" than normal while he recuperates. Between that and preparing for the holidays you'll have quite a bit on your plate. Wishing you both well.

Yeah, I’ll have to see if the tree gets up this year. Thank goodness everything I have to buy can come from amazon.

 

[macraven]

It’s not easy to sleep at home while Richard is still in the hospital

Relax if you can while he has visitors to see him while he is still there

He will improve now the doctors have him on the correct meds

 

[moon]

YAY!!!

 

[kimblebee]

Well, some days are better than others..

I just talked to my sister who went up to see him and he’s not having a good day. He can’t sit up any more and he could barely stay awake for her visit.

I asked him to call me at some point today just to tell me how he’s doing.

Maybe it was unrealistic but I really expected him to be a little bit better than yesterday.

Now I’m back to crying and being scared. I feel so helpless and guilty that I’m not going up to see him today.

 

[Hikergirl]

Hugs to you, and keep thinking positive thoughts.
It may just be one of those things where he is going to go back and forth a little before getting better. He's fighting a serious infection so it will take time for the meds to work.

 

[AnnaS]

 

[Twilight Sparkle]

Kimblebee, I just saw this thread. Hoping Richard is well and home soon. Also hoping you are able to get some rest. So sorry Richard is ill but thankful his team has a diagnosis and treatment plan in place.

 

[Neesy228]

His body needs to rest to heal. I’m sure it will look like he’s taking steps backward, but it is likely just a slow, but steady, healing process.

I’m so glad they were able to find answers and start treatment. And I hope you are able to rest well soon.

 

[dotfurio]

Kimblebee don't feel guilty - he's in good hands, he has visitors, and you need to take care of yourself, too! If you're well rested and feeling well you'll be able to better care for him when he needs you.

 

[CdnCarrie]

We don’t really have ticks here. They’re more in the woods and grassy areas. Plus, our bugs have been dead for a good month (it’s freezing here and snowing). Thanks for the thought though.

It's not the season for ticks here of course but it is possible to get ticks in the city. My dog gets them in the dog parks right inside the city.

 

[Pea-n-Me]

Well, some days are better than others..

I just talked to my sister who went up to see him and he’s not having a good day. He can’t sit up any more and he could barely stay awake for her visit.

I asked him to call me at some point today just to tell me how he’s doing.

Maybe it was unrealistic but I really expected him to be a little bit better than yesterday.

Now I’m back to crying and being scared. I feel so helpless and guilty that I’m not going up to see him today.

Kim

I've been a little concerned seeing posts predicting all will be well now.

It is still early, and what he has is very serious. There may be ups and downs as well as complications from treatment along the way, unfortunately. (And if there aren't, or he makes steady progress, then we count his blessings!)

Not saying this to scare you in any way, but to be realistic. Bacteria that has spread throughout the body, as you've seen, can do damage, and it's difficult to treat. Medications needed are strong and often numerous, and can be tough on the body, as well. His hospital course could be lengthy. And no doubt there will be ups and downs. He's not out of the woods yet. So prayers and good thoughts should continue!

I think it's important, if you're not there, that you continue to get daily updates from his treatment team, and make it clear that they should be talking to you, and not necessarily those that are at his bedside in your place, because important information can get lost that way, and teams prefer, and rightfully so, to "speak to just one family spokesperson". That person should be you. (And just to be clear, it doesn't mean that nobody will talk to anyone at his bedside; it means that pertinent information about his condition, his care, and plans for treatment, specifically, are addressed primarily with YOU so that you are all on the same page, you know what's going on, and you agree, etc. Things can change and turn rapidly sometimes and tests may have to be done quickly, etc. Where I am we have something called a Health Care Proxy which legally defines who information can be shared with and also delegates someone who can make decisions for him if he cannot.** See below.) Next time you go in just have a conversation with his team (doctors on case and primary nurse or nurse of the day), if you haven't already, and explain your condition and why you may not be able to be in every day, but that one of the doctors should call you daily, and ask them to document this in his plan of care so that all team members can see it. (Not sure what type of hospital he's in but in some, such as teaching hospitals, teams can change regularly so that there are different people continuing his care that should have all the same information the previous team had.) But when you're rested, it might behoove you to try to go as often as you can, even for a little while, so they get to know you and you can be involved in his care as much as possible.

It's also important to address the issues that caused the infection so that this doesn't become an ongoing problem and he has his best chance of getting better and staying healthy. For instance if he's diabetic he'll need to learn how to keep his blood sugars in range; if he's overweight he'll need to try to lose some weight; if there's fluid in his lower extremities, what can be done to lessen it; does he see a podiatrist regularly to check his legs and feet, etc. Stress can also be related to disease, so identifying sources and seeing if there are ways to lessen them can help, too. These are all things you'll be involved with, as well, as the person he lives with and who helps grocery shop and cook and all that. I generally spend a lot of time with patients and their spouses or people they live with to talk about these types of things, because it's important to their care and well-being.

** I think this may be what you have where you are:
http://www.hsc.mb.ca/patientsLivingWill.html

You know I'm here if there's anything I can help you with.

 

[kimblebee]

Kim

I've been a little concerned seeing posts predicting all will be well now.

It is still early, and what he has is very serious. There may be ups and downs as well as complications from treatment along the way, unfortunately. (And if there aren't, or he makes steady progress, then we count his blessings!)

Not saying this to scare you in any way, but to be realistic. Bacteria that has spread throughout the body, as you've seen, can do damage, and it's difficult to treat. Medications needed are strong and often numerous, and can be tough on the body, as well. His hospital course could be lengthy. And no doubt there will be ups and downs. He's not out of the woods yet. So prayers and good thoughts should continue!

I think it's important, if you're not there, that you continue to get daily updates from his treatment team, and make it clear that they should be talking to you, and not necessarily those that are at his bedside in your place, because important information can get lost that way, and teams prefer, and rightfully so, to "speak to just one family spokesperson". That person should be you. (And just to be clear, it doesn't mean that nobody will talk to anyone at his bedside; it means that pertinent information about his condition, his care, and plans for treatment, specifically, are addressed primarily with YOU so that you are all on the same page, you know what's going on, and you agree, etc. Things can change and turn rapidly sometimes and tests may have to be done quickly, etc. Where I am we have something called a Health Care Proxy which legally defines who information can be shared with and also delegates someone who can make decisions for him if he cannot.** See below.) Next time you go in just have a conversation with his team (doctors on case and primary nurse or nurse of the day), if you haven't already, and explain your condition and why you may not be able to be in every day, but that one of the doctors should call you daily, and ask them to document this in his plan of care so that all team members can see it. (Not sure what type of hospital he's in but in some, such as teaching hospitals, teams can change regularly so that there are different people continuing his care that should have all the same information the previous team had.) But when you're rested, it might behoove you to try to go as often as you can, even for a little while, so they get to know you and you can be involved in his care as much as possible.

It's also important to address the issues that caused the infection so that this doesn't become an ongoing problem and he has his best chance of getting better and staying healthy. For instance if he's diabetic he'll need to learn how to keep his blood sugars in range; if he's overweight he'll need to try to lose some weight; if there's fluid in his lower extremities, what can be done to lessen it; does he see a podiatrist regularly to check his legs and feet, etc. Stress can also be related to disease, so identifying sources and seeing if there are ways to lessen them can help, too. These are all things you'll be involved with, as well, as the person he lives with and who helps grocery shop and cook and all that. I generally spend a lot of time with patients and their spouses or people they live with to talk about these types of things, because it's important to their care and well-being.

** I think this may be what you have where you are:
http://www.hsc.mb.ca/patientsLivingWill.html

You know I'm here if there's anything I can help you with.

I know you mean we’ll but holy cow I am not at a place to be thinking about wills and power of attorney at all. The doctors have given me no indication that they are thinking that way either.

I don’t have the brain power to respond to anything else you posted right now.

I will say, though, that everyone knows I am the one to talk to. They have my phone number and have called a few times.

 

[Pea-n-Me]

I know you mean we’ll but holy cow I am not at a place to be thinking about wills and power of attorney at all. The doctors have given me no indication that they are thinking that way either.

I don’t have the brain power to respond to anything else you posted right now.

I will say, though, that everyone knows I am the one to talk to. They have my phone number and have called a few times.

I’m sorry, I didn’t mean to imply it means he’s not going to make it or any thing like that - at all - just that they help define for caregivers who to talk to and who can make decisions if, during the course of care, the patient’s mental status is altered. Unfortunately when you’re looking for definitions, they often come up relating to end of life care. But they are equally important even when someone is critically ill.

 

[PollyannaMom]

Sorry about the bad day and will continue to keep you both in my thoughts.

I'm sure there will be ups and downs, but I hope tomorrow is brighter!

 

[kimblebee]

I’m sorry, I didn’t mean to imply it means he’s not going to make it or any thing like that - at all - just that they help define for caregivers who to talk to and who can make decisions if, during the course of care, the patient’s mental status is altered. Unfortunately when you’re looking for definitions, they often come up relating to end of life care. But they are equally important even when someone is critically ill.

Thank you for clearing that up. I misinterpreted what you were saying. My biggest fear is that I’ll lose him so I’m touchy about even a thought in that direction.

They all know I am the one to talk to because he literally doesn’t have any blood family besides his ******* brother. I know they have some papers for me so I’ll get them tomorrow when I go back up.

Sorry about the bad day and will continue to keep you both in my thoughts.

I'm sure there will be ups and downs, but I hope tomorrow is brighter!

I do have to keep that in my mind. I think I was under the impression that he would just continue to improve every day and he’d be home by next weekend. Not that he’d be 100%, but that he’d be healthy enough to leave the hospital.

I talked to him a few minutes ago and he’s ok, but utterly pooped out from yesterday. So, my expectations have been adjusted and it will take as long as it takes.