Covid- struggling today

[Angelssavepoppy]

Hi all,

I’m really struggling today. Dad got the convalescent plasma yesterday and I guess I got my hopes up. This morning we got the news that things were moving in the wrong direction- he’s still spiking fevers, oxygen settings had to be raised on the vent, they’re leaving him in a-fib because every time they shock him he goes right back to it and the meds are no longer working.

I know the plasma isn’t magic, plus I’m a scientist and I should know better than to get my hopes up. A doctor colleague told me that they’ve discharged patients in my dads condition and to not lose hope. But it’s so hard. I love my dad so much. I have a ten month old baby girl who was his first grandchild- he took care of her every day for five months while I worked. He loves her so much, she’s his world. And every time we open our Facebook portal to call my family (I’m five hours away from everyone) she says “pop? Pop?” Thinking it’s going to be him.

I’m just struggling today. I know that all hope is not lost but it’s getting tougher as the days go by.

Thanks for listening. I know we are all going through something terrible and I really appreciate everyone in this group for taking the time to care. I wish I could wave a wand and make it better for all of us.

[Ferham]

Please don't beat yourself up, in these dark times we grasp at any angle where we feel there is hope. My daughter who is a pharmacy student was talking about the plasma trails the other day. As your doctor friend told you , don't give up hope, I know it's easy for us to say , but I think most of us here are sat rooting for every one of these stories to become success stories , sending you love an positive thoughts x

[Angelssavepoppy in reply to Ferham]

Thank you so much. I won’t give up hope. Miracles happen. Trying to stay positive and rooting hard for success stories for all of us.

[Sepsur]

He has everything to live for - I always dreamt about my family & frequently about my daughters whilst in a coma - hope things improve tomorrow.

[Angelssavepoppy in reply to Sepsur]

We just spoke to him over the phone. Spent 2.5 hours talking to him and reading him stories. I hope somewhere he heard us and it spurred him to fight.

[Sepsur in reply to Angelssavepoppy]

Exactly 😊

[Ferham in reply to Angelssavepoppy]

Can I ask, was this on his own phone or does the hospital have a video service ? I'm sure it has spurred him on, lovely thing for you to do x

[Angelssavepoppy in reply to Ferham]

We asked the nurse to put the hospital phone by his ear- she transferred our call to him and then ran to his room to answer the phone. We did it again today for another 2 or so hours. Just for him to hear our voices, maybe give him a little extra fight. ❤️

[Bigyellow in reply to Angelssavepoppy]

We took an I pad to the hospital and then just begged to have it stay with him. At the time it was just playing videos of us talking to him as he was not waking up.Now he is awake, seems to understand and after a lot of struggle for contact now we have to protected slots to face time.one at 9 am and one at 8.30 pm. we see improvements every day.He only woke 10 days ago.I feel your pain, my husband spiked temps over and over and his progress was the longest rollercoaster.At least we have now found something of a community of people who understand. Keep strong and on the days you just can't keep strong just try and keep it together, LOIS

[Angelssavepoppy in reply to Bigyellow]

Oh Lois that is such a good idea. I truly believe that having loved ones “present” in this way is a powerful healing aid. It must have been hard to see him over video. This sounds awful to say but I am a bit afraid to see my dad in the state he is in. He was always so healthy, so vital and strong. And- It sounds silly, but my dad is always properly put together- hair always cut perfectly, always clean shaven. It was important to him. And last time we got to see him on FaceTime awake- he said with the little voice he had left -“ I don’t want you to see me like this”. It broke my heart because I (and the rest of my family) just wanted to be there with him, holding his hand and going through it with him. And like always, he was putting us before himself, even in his fragile state.

If you don’t mind my asking, how long did it take your husband to wean off the ventilator? They’re saying they’re not sure if my dads lungs are permanently damaged or not, and they have to wait and see how his lungs progress. I’ve seen other people taking a long time for their lungs to clear and I’m just hoping that’s the case with my dad too.

[Bigyellow in reply to Angelssavepoppy]

So Richard is still weaning and we have been told it will take a long time because all his chest muscles and diaphragm have atrophied from so long on a ventilator. Today is day eleven. They began with small reductions. on his pressure settings and Oxygen.he now breaths normal 21% Oxygen and does sprints when they turn off the ventilator pressure.He has got up to 2 X 2 hour sprints yesterday.Also he has masses of sticky mucus clogging his lungs and his cough is too weak so they say he may need his trachae for some time to help suction it out. This is helping .We know that he has damage to the top lobes of both lungs and didn't know if he would wean but things do improve slowly.

[Mccarthy0702 in reply to Angelssavepoppy]

I understand your worries , we have our first FaceTime call with my dad last week I was really shocked to see him face to face. He is 5 weeks on the ventilator is doing well with his lungs and on only 28 per cent oxygen and low pressure .

It’s the other problems holding him back being his kidneys and now a lot of swelling and not being able to get lines in which is a real worry . Almost one step forward two back.

I can’t get the imagine of my dad out of my head but am hoping for another zoom call today as he did recognise us and had two tears down his face. My dad is a very proud man and lives for his family I truly believe as hard as it is for us it spurs them on to keep fighting x

[Chanlib]

Please please try and stay positive and hopeful. I know that’s hard to say when we have bad days, but things can change so quickly for the best. So please try and hold to all the hope in the world! Praying for you and your dad!

[Angelssavepoppy in reply to Chanlib]

Clinging to the hope that things can turn around quickly. Praying praying praying. Thank you for the encouragement.

[avnipiro]

Try to keep positive. Im also having bad day.

[Angelssavepoppy in reply to avnipiro]

Trying, it’s so hard though. We are in this horrible nightmare together. We need to cling onto the hope that things can turn around quickly.

[Rgsable in reply to Angelssavepoppy]

Please keep the faith. This happened to my husband when they said they did all they could and none of the medications are working and that he will not make it. But he did with prayers and God help. We will keep you in our prayers x

[Angelssavepoppy in reply to Rgsable]

Thank you for giving me hope ❤️

[Marcita]

Virtual hug. We are struggling here today too.

[Angelssavepoppy in reply to Marcita]

I feel the hug, sending one right back. How is today going so far?

[Marcita in reply to Angelssavepoppy]

We are doing much better today but still being careful with our next steps🤞

She's weak but so far she's stable and alert at the ward.

[Angelssavepoppy in reply to Marcita]

Ah that is such wonderful news! I’m so happy to hear that- stable and alert is a powerful combination. I’m smiling big right now- totally understand the caution but celebrating the positives 😊

[Axogirl49]

I also feel like I’m trapped in a nightmare. I keep thinking it’s too horrible to be real.

[Angelssavepoppy in reply to Axogirl49]

I wish we were dreaming this so badly. Though I don’t think my brain is even capable of coming up with a nightmare like this...hope things are going okay for you today.

[Rgsable]

How is your dad today?

[Angelssavepoppy in reply to Rgsable]

Thanks for asking pretty much status quo, although he was able to wean off the pressors for his BP and his labs are stable/getting a little better. Kidney and liver are still functioning okay, echo on heart came back good. They said his problem now is that his lungs look like concrete and he’s on the highest vent settings. He has a secondary infection in his lungs so I’m hoping if that clears maybe his lungs will get a little better.

I don’t know, one step forward two steps back...the roller coaster continues.

How is everything with you today?

[Ferham in reply to Angelssavepoppy]

Have they proned him , I know it helps on patients with higher vent settings ? Good news on the heart and other organs. It's a tortured nightmare for all of us . Hoping tomorrow brings better news all round for everybody .

[Sepsur in reply to Ferham]

Yes it worked for me - eventually proned 3 times

[Angelssavepoppy in reply to Ferham]

They’ve proned him, they actually said that there may not be a benefit in proning him anymore bc it’s meant to be a short term thing. They told us- When you prone, it opens up different areas of the lungs than when you’re on your back. But when you do it too much, those areas that are open can stiffen the same way as the areas that did when they’re supine. So basically it’s a short term thing. Now we just need to try to get his lungs clear over time. They said they weren’t sure if the damage was permanent or not, it’s just a waiting game.

I’m hoping that he starts to clear soon. It’s so scary to think that his lungs might never get better. I’ve read stories of some people’s lungs taking awhile to clear, so I am praying that he is one of these cases.

[Sepsur in reply to Angelssavepoppy]

ARDS creates the issue of the lungs getting stiff - there was one moment where they described my lungs as resembling liver - dense!!

Thankfully I have minimal scarring from ARDS, my left lung 3.5yrs later got buggered by a pleural effusion😳😳caused by leukaemia ( we think) although specialist is undecided.

Your Dad sounds like a brilliant & lovely man - I saw a post earlier😀

Wishing everyone on here who is struggling along - good news - or stable news tomorrow.

[Angelssavepoppy in reply to Sepsur]

Thank you Sepsur 😊. I’m so happy that you have minimal scarring, that gives me some hope. He is fighting a secondary infection now so I am really hoping they can deal with that. I know secondary infections are scary in the ICU. You always give me hope.

And thank you for saying that about my dad, he really is a wonderful man.

[Sepsur in reply to Angelssavepoppy]

Poor man, I had a score of secondary infections - final one was glandular fever 😳

[Rgsable in reply to Angelssavepoppy]

This is how it goes on and off but the good thing is there is progress showing 😀. Keep the faith x

[Sepsur]

How are you getting on?

[Angelssavepoppy]

We lost my dad last night. Thanks for following up, Sepsur. He was a great man and I am absolutely gutted. I don’t know how to get on from here.

[Chanlib in reply to Angelssavepoppy]

I am so so sorry to hear. Thoughts and prayers to you and your family xxx

[HopefulA in reply to Angelssavepoppy]

I am so sorry and my heart breaks for you.

My thoughts and prayers are with you and your family x

[Marcita in reply to Angelssavepoppy]

I'm sorry. I have no words... May time heal your pain ❤

[Mccarthy0702 in reply to Angelssavepoppy]

So sorry for your loss , this virus is cruel 😢

[Mguzman1 in reply to Angelssavepoppy]

Sorry for your loss I loss my mom on the 30th April from this horrible virus I hate it so much. No viewing and the burial is even worse. We bury her on the 13th of may. We are all living a nightmare I’m angry and this will take a life time to get over. I am so sorry for your loss

[lonleyhelpless in reply to Mguzman1]

I am so sorry for your loss. Sadly, they don't allow viewing of Covid patients.its so frustrating!!!!! Why did it take them long to arrange funeral? Hope you find patience and peace soon xxx

[Sepsur in reply to Angelssavepoppy]

I am so profoundly sorry to hear this. Take care of yourself. M

[Sepsur in reply to Angelssavepoppy]

I am so profoundly sorry to hear this. Take care of yourself. M

[Rgsable in reply to Angelssavepoppy]

I am so sorry for your lost. My thoughts and prayers are with you x

[avnipiro]

So sorry, my thoughts and prayers to you and your family. X

[Ferham]

I am so sorry for the loss of your dad, he sounded like a wonderful man . My thoughts and prayers are with you xx