Positive thoughts please-ups and downs p.42

Let us know what you find out. Improvement can be painfully slow in some cases.


That’s is 100% true and I’m having a hard time remembering that. I think the problem is because when I spoke with his whole team on Friday (while still in icu) they were thinking a week for recovery. I guess it’s only been two days since then so I need to slow down on my expectations.

I’m just so ready for him to be home. I miss his dad jokes and him showering me with Star Wars minutiae until my eyes glaze over. I miss being able to touch him.

Ok, I’m getting weepy and you all don’t need to see it. Thanks for the continuous thoughts.

Even though my case isn’t as dire as the others, I can’t believe I’ve joined the other wives on their other threads with my own medical nightmare thread.

When I was feeding him his supper tonight I almost had an out of body experience and I remember thinking I can’t believe I’m feeding my husband. This isn’t supposed to happen..he’s too young. I feel like an imposter. I know that doesn’t make sense, I just never though this situation would happen to me.
 
So sorry to hear your family has been going through so much. I certainly will keep you in my prayers and am hopeful you see all of the positive progress you're looking for very soon.
 

I'm so sorry to hear that.... I went through this in the 1st grade. I woke up and couldn't walk. I can't really remember much about it, but my thoughts and prayers are with you.
 
So, I just got home from today’s visit. I was there for three hours and he was able to stay awake the whole time. He still has no use of his arms and legs which the doctors are still trying to figure out. I don’t want to go down that road yet but what if he never regains use? I know we’ll figure it out but I don’t know how.

Hmmmmm. I'm sure they will figure it out. Just keep telling yourself he is getting excellent care and in the right place. They will get to the bottom of it.

Couple of things came to mind. Has he been tested for Guillian-Barre? Tick paralysis? I know you don't think it's tick related, but couldn't hurt to test for it. Sepsis? Hang in there and let us know how he is doing today.
 
Hmmmmm. I'm sure they will figure it out. Just keep telling yourself he is getting excellent care and in the right place. They will get to the bottom of it.

Couple of things came to mind. Has he been tested for Guillian-Barre? Tick paralysis? I know you don't think it's tick related, but couldn't hurt to test for it. Sepsis? Hang in there and let us know how he is doing today.

GB was ruled out. It was high on their list of possibilities at the very start. I keep saying paralysis and I don’t think that’s the right word. He can move his arms and legs but there’s so much pain and weakness that he can’t move them much at all and can’t do anything like feed himself. It feels like we’re at a plateau right now, no improvement but no worsening (which is more important to me). I know I’m being impatient but like I said, I’m ready for him to be home.
 
I just got a call from the hospital. He had been transferred to another hospital for a specific test, an echo. They now are checking for myocarditis which is an infection in his heart muscles. Seriously, when are we going to catch a break. I made the mistake of googling this and now I’m terrified. We won’t know the results for 24 hours. I know I shouldn’t worry yet because we don’t know yet if that’s what it is but if it is, that’s not good.

I wish my daughter was home. She’s always a good distraction. My family helps, but it’s not the same you know?
 
Oh no, no, no, no, no. Don't you dare google. It is not a good thing for you to do and always brings up the worst case scenarios. Do not google anymore! IF he does have this, it is treatable. Do not worry about this yet. Even if he does have this, at least you know what you are dealing with and he can start the correct meds and diet to treat it. Did he have any "heart" symptoms like chest pains or shortness of breath?

If you MUST do something. Go to our This Is Us thread and start posting theories and speculations!
 
Yes, I agree that it’s best not to google in this instance.

Just remember to breath and focus on his improvement up to this point. It’s great that he was moved from ICU and good that they continue to search for answers to best treat him.

Hang in there. Still sending positive thoughts your way.
 
Oh no, no, no, no, no. Don't you dare google. It is not a good thing for you to do and always brings up the worst case scenarios. Do not google anymore! IF he does have this, it is treatable. Do not worry about this yet. Even if he does have this, at least you know what you are dealing with and he can start the correct meds and diet to treat it. Did he have any "heart" symptoms like chest pains or shortness of breath?

If you MUST do something. Go to our This Is Us thread and start posting theories and speculations!

No, he didn’t have any symptoms at all. He’s never complained of heart pain or shortness of breath or anything. Maybe all of this was just being kept at bay and the flu shot weakened him just enough for all this to take over.

My dad is going up to see him this afternoon and I know he’ll ask a lot of questions of the dr or nurse or whoever he can get to.
 
It might be a good time to sit yourself down and give yourself a good talking to. Remind yourself that nothing good will come from borrowing trouble because nobody needs more than their share. Make a solemn promise to yourself that you will put all of your energy into thinking in positive terms and positive terms only and that things will work themselves out. Positive thoughts and positive energy make great handholds when undertaking a steep climb. Try and remember it's one step at a time and not all at once -- and be prepared to keep throwing up positives when it's necessary to change directions while navigating around obstacles that come your way.
 
Kim, sorry this is going to be a rough ride for you and obviously your DH.

If I can give any advice what so ever is do NOT google. It'll drive you nuts. Any questions, save it for nurses and doctors. Hang in there, girl! :hug:
 
I just got a call from the hospital. He had been transferred to another hospital for a specific test, an echo. They now are checking for myocarditis which is an infection in his heart muscles. Seriously, when are we going to catch a break. I made the mistake of googling this and now I’m terrified. We won’t know the results for 24 hours. I know I shouldn’t worry yet because we don’t know yet if that’s what it is but if it is, that’s not good.

I wish my daughter was home. She’s always a good distraction. My family helps, but it’s not the same you know?
Honestly, given how serious this sounds, I would be worried about him being in a hospital that can't perform a simple test like an echo in its own facility. Will be staying at the new facility? I would be pushing for it
 
Honestly, given how serious this sounds, I would be worried about him being in a hospital that can't perform a simple test like an echo in its own facility. Will be staying at the new facility? I would be pushing for it

I don’t know why he was transferred for that test. Maybe I misunderstood what the nurse was saying when she called. I was half asleep and she had a very thick accent. I have no issue with the hospital he is in. There are closer ones, so I wouldn’t be mad if he got moved to one of those. The hospital he is in has a ct scan and an mri so it’s not like he’s in some rinky dink hospital.

Any updates?

Nothing yet. My brother has been up to see him and I’m waiting to see how he was.
 
Honestly, given how serious this sounds, I would be worried about him being in a hospital that can't perform a simple test like an echo in its own facility. Will be staying at the new facility? I would be pushing for it

I was thinking the same thing, sounds like he might be in a small community hospital? Maybe see about transferring him to a higher acuity hospital, maybe a teaching facility, they usually have access to many specialists too.

Nevermind, Kim was posting at the same time.
 





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