Waiting and Desperation..

[HopeforTony]

So since my last entry I told you guys that Tony would be moving out of ICU to a bed upstairs for speciality care, well we are still waiting for the processing and paperwork to be completed before that so it may still take another day or two.

Good news is that Tony has successfully done a 24 hour wean off the vent and also has been breathing on his own since about Friday. The full day wean was yesterday and currently he's been breathing on his own since around 8am and now being about 5pm.

Bad news: My gran hasn't been maintaining enough calories and nutrition so they are asking us to move to the next phase which is a PEG. I don't want her nor does she, to go through another major surgery. Her journey began 2/25 and has been so strenuous so this is even more so stressful. I feel like I cant catch a break sometimes.

Other than that I am desperately wanting Tony to stay awake or break OUT of his up and down thing he's doing. He will open his eyes to his name and things like that but then he goes back to sleep. I am trying so so hard to be patient but its so HARD. I am so lost without my best friend. We did everything together. I still have trouble eating and sleeping but I know I have to see trying because I need to be well for the both of them. Im just so desperate and I would give anything for him to be finally fully wakeup. Im so hurt I just dont know what else to say.

[LindaHannah]

Hello, I know you miss your Tony, and want to see him return. And this does and a lot of your time, and patience. And managing your Nan too. A PEG is a good nutrition route to help her get her strength back. Make sure you take you breaks during the day when caring for Tony and your Nan. Tony seems to be getting stronger though ☕️🍩🍪

[HopeforTony in reply to LindaHannah]

Thanks. Yea but she's had surgery and she hates it oh I know I told her. I take a break when I go home but thanks as always xx

[LindaHannah in reply to HopeforTony]

Hopefully her appetite will slowly return as she recovers. You sound like you are on top of what you need for you. Here's to your Nan and Tony getting stronger and better. Sending you lots of love xxx💕

[Kirk5w7]

I know weve told you this before but it is still early days. Tony needs a he sleep and ret to allow his brain to reover was he best it can. Dont be too ready to wake him and bombard d his brain before its ready to respond.

I was 3 weeks in a coma before I started to show signs of waking. It really is a long slow process. I didnt do much at all until i was in rehab, then i was ready and could respond so much better..

I know you are impatient but being there and supporting him is really helping him right now.

Look after yourself.

Janet

[HopeforTony in reply to Kirk5w7]

It's so hard. This makes three weeks I think k today. He first admitted on, 4/5.. I know I know it's just so hard thanks for the help. My life right now is so hard without him he's my everything. You're right thanks I will try

[cat3]

Armani, any brain injury needs a really long period of convalescence often requiring the brain to switch off completely. Doing nothing is what it needs most............. for as long as it takes depending on the severity of the damage. A broken limb takes 6 to 8 weeks to heal despite it being a simple process of bones knitting together. We don't question that, and yet we're impatient with a damaged brain despite its delicate nature and extreme complexity.

I'm sorry you're worn out with all the anxiety of Tony's condition and your nan's issues m'love. You desperately need more confirmation of progress and it's a situation we see time & time again in loved ones, but it's still SUCH early days.

Love & hugs, Cat xx

[HopeforTony in reply to cat3]

You're so right I under stand I'm just so lonely and lost right now. Thank you x

[Lauren_1006]

I know how you feel. It’s been nearly 10 weeks now that my dad has been in a coma and being patient and not knowing the long term out comes are the hardest things ever. I just want my dad back. They are trying their best though xx

[HopeforTony in reply to Lauren_1006]

I know and I'm so sorry I hope you get him back SOON hang in there xx

[sue-66]

My partner was at 15 weeks before he asked the staff where he was, it does take time and was still a long slow process of improving. He was in hospital a year and has now been home a month, but he continues to show progress. But there are times in the last year, where it was a step forward then 2 back and there are no quick routes. I would often turn up and he would sleep all the visit and I let him. I found it helpful to talk on here and headway, to understand the process he is going through. I am an impatient person, but I've had to take a step back and it is hard, but he's doing well. Take care of yourself, I struggled early on but I now try harder to look after me too. Now he's home, its full on.

It's good to hear on he's doing x

[HopeforTony in reply to sue-66]

Thanks so much I'm happy your partner is home. You're an amazing partner I wish you guys all the luck. Xx

[sue-66 in reply to HopeforTony]

You are doing amazing too, its a long road, but love will see you moving forwards and through the tough times, look back on how far he has come. X

[HopeforTony in reply to sue-66]

You are very right I will always keep that in mind Tysm Sue

[soworried1]

HI there, you are doing a great job - the hardest bit is waiting - desperate for answers - desperate for any little sign that things are on the way up - it is torture - just know you are doing amazing. Your Nan and Tony will gain emotional strength knowing you are there fighting with them every step. Love to you Armani. x

[HopeforTony in reply to soworried1]

Tysm you've said exactly how I feel xx

[paxo05]

It may seem a repeated message but it is early days. It may seem such a slow process and at times it is.

An idea is to keep a journal each day. Not long essays but just brief notes of how Tony is.

When you then look back at them you may notice small improvements that are easily missed.

Remember he is still on the mend and even when he has recovered as good as he will there will still be improvements as he adapts to new ways of doing things.

Keep in there.

Pax

[HopeforTony in reply to paxo05]

Thanks I have a journal I will continue to do so thanks again

[Brea58 in reply to HopeforTony]

That's a great idea! I wish my family would of have done that although my brother emailed every one every day on my condition.

It's funny now that I'm out of the hospital, the stories they tell about how I was. I have no memory of anything I did.

You will too.your life together is off to a very good start. It's quite obvious that You love this and are there by his side every day. THAT'S LOVE!

[Brea58]

To get his vital signs ask the nurse. They.wont tell you. But if you asked they will.

I ask all the time for before my hospitalization I went to first care and they couldn't get any vitals from me.

I should.of been dead .

But By the grace of God and lots of prayers, I won the fight.

Still recovering, but I get better each day. I'm sure Tony will beat this knowing you are right there with him.

[HopeforTony in reply to Brea58]

Oh wow that's amazing. Yes they only do vitals every four hours or something waiting for him to be moved because he will be hooked back up to monitors. Thanks so much continued recovery for you xx