Disappointed : So the doctors came in to speak with... - Headway

Headway

10,506 members12,812 posts

Disappointed

HopeforTony profile image
19 Replies

So the doctors came in to speak with me because I was concerned about Tony's sugars being so high since he's been on the liquid feeding and they said they wouldn't change the food but only give him more insulin. That didn't help me. Then I find out the new speciality care place we submitted to insurance and even did a tour for yesterday, that we were told on Friday was just waiting for approval, was denied. Simply because to them Tony hasn't made progress. I even mentioned the videos of Tony tracking with his eyes, holding my hand and him crying and sticking out his tongue on video.

I'm really said right now and had to hold it together while all three of them were staring at me and telling me this in his room. I refuse to send him to a nursing home and now this fell through. I'm very upset and now having to even deal with the other place who is ready to discharge my gran next Friday when she doesn't even eat enough to maintain her nutrition. I'm very scared and stressed and sad.

Written by
HopeforTony profile image
HopeforTony
To view profiles and participate in discussions please or .
Read more about...
19 Replies
cat3 profile image
cat3

I'm so sorry Armani. There's nothing anyone can say which is helpful or reassuring right now is there ? But I guess it's possible Tony can still make progress with encouragement from you and his dad wherever he is. Are the doctors saying there's nothing more they can do for him ? xx

HopeforTony profile image
HopeforTony in reply to cat3

Well to be honest they come in ask him to squeeze there hand and that's it. I provide the physical therapy of his limbs, and exercise his hands and put on his splint as per physical therapies request since they don't do it as they should. But I play the music, talk, I've asked him to do things because it seems he responds to me more than anyone. But to them if he doesn't squeeze a hand it's not seen as much progress. I think that's too hard personally but I know there is not much anyone can say but I believe in miracles and I will continue time to pray ans hope for the best, just wish he was sooner. Thanks for the sentiment as always

HopeforTony profile image
HopeforTony

As it seems! 😔

cat3 profile image
cat3

For what it's worth m'love all my family have been rooting for you both, so lots of positive & hopeful vibes should be coming your way. Thinking of you with much love, Cat xx

HopeforTony profile image
HopeforTony in reply to cat3

Thanks so much to them and you xx

Hodder1992 profile image
Hodder1992

Hello HopeforTony

I, my family friend Lauren and new girlfriend Hayley are so sorry to hear this bad news.

But I, my family friend Lauren and new girlfriend Hayley are still praying for you, Tony and family and send all of our love including hugs.

Ben, family friend Lauren and new girlfriend Hayleyxx

HopeforTony profile image
HopeforTony in reply to Hodder1992

Thanks to you all xx Same to you guys as well

kerr28 profile image
kerr28

Hi HopeforTony

We're all very sorry to hear this news.

Just to let you know that we're still thinking of you, Tony and his family in our prayers and thoughts 24/7 and send you all our love and hugs as well.

Laura and Amanda's familyxxxx

HopeforTony profile image
HopeforTony in reply to kerr28

You guys too hope all is well thanks xx

kerr28 profile image
kerr28 in reply to HopeforTony

Hi HopeforTony

Amanda is still in a coma and she's showing good signs of improvement especially when she squeezed ours and one of the nurses and doctors hand an hour ago.

We're still thinking of you, Tony and his family in our prayers and thoughts 24/7 and send you all our love and hugs as well.

Laura and Amanda's familyxxxx

HopeforTony profile image
HopeforTony in reply to kerr28

That's great to hear same here prayers for u guys everyday

I think everyone on here is rooting for you. With so much positivity coming your way, things must improve for you.

HopeforTony profile image
HopeforTony in reply to

I sure hope so thanks to you guys xx

LindaHannah profile image
LindaHannah

Hey, firstly I am sending you a big hug 🤗❤️

This is hard to know how to advise you as to what next as I think you are in the States as you mentioned 911 before and insurance for health care. If this is the case how does insurance work and what does it cover, over how long roughly? Xxx

dam0309 profile image
dam0309

Hi Armani, I haven't posted before but have been following your posts and praying for you and Tony (and your nana).

Assuming that you are in the USA and obviously things are very different from the UK where we have our wonderful NHS, can you appeal the Insurance Company's decision?

Could your Congressman/woman help you? Write to the CEO of the Company.

When we needed a support package to bring my son home we were refused funding via the NHS as his needs were not totally medical (he has a learning disability pre accident) and we were reliant on the package from Social care whose budgets are stretched to the limit. I wrote to the Director of Social Care and involved my local MP (equivalent of congress person in the UK) and basically was a pain in the butt until we got what Josh needed.

Don't give up, Tony is making progress and needs the best possible follow up care which you pay for via your insurance.

HopeforTony profile image
HopeforTony in reply to dam0309

Yes I just finished writing the appeal now. They said it was based on lack of doctors notes which make me upset because they come in once in a while to ask him if he can squeeze their hand and then they leave. I do not believe they have been doing their due diligence. Since April 5 th I've managed to get him to stick his tongue out, squeeze my hand, cry and more. Thanks for the advice. I will look up that information for US ALSO. XX THANKS SO MUCH

Lauren_1006 profile image
Lauren_1006

Hope things are a bit better 2 days on? It’s so hard when the bad days come. My dad didn’t wake up for me when I saw him on Sunday but was super awake yesterday when my husband visited. There’s talk of his operation now being delayed. Some days are just crap and hard to handle. Sending love xx

HopeforTony profile image
HopeforTony in reply to Lauren_1006

Sorry to hear that. Actually after writing appeals I got there late to find out they moved him which was shocking and nerve-racking. Then when I finally found him the way they had him laying in the bed angered me because it looked as if he wqs just thrown there it was bad. But the appeals go out this morning so we shall see what happens. I hope your dad wakes up to you again. And thanks xx

Lauren_1006 profile image
Lauren_1006 in reply to HopeforTony

Oh no that’s not very nice to see. I do hope you get some results soon x

You may also like...

Disappointed

higher now than before my stroke. I'm quite worried about starting melds as last time I had them I...

Disappointing seizure…

factors- there were some social gatherings, that were outside of my control, I didn’t cope with...

Waiting and Desperation..

and now being about 5pm. Bad news: My gran hasn't been maintaining enough calories and nutrition so...

At hospital now with Tony

actually and his nurse said she was next door giving ice-cream and she has to order his food. I dont

Astonishing improvement after almost 3 years

peg feed. We've had the various milestones, where he would nod, shake his head, follow us with his...