So frustrated!! : So I've had a call off my mother... - ICUsteps

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So frustrated!!

Lf91 profile image
Lf91
16 Replies

So I've had a call off my mother in law saying the nurses have said my father in law should be progressing more than what he is at this stage. Didn't give any further info as to what that means. He's been agitated and apparently confused (he can't talk because of the trach) so I don't know how they know he's confused. He's still not off the sedation completely so could this be holding him back? He stood up for 1 minute 2 days again and only managed a few seconds yesterday as he was too tired. He's so tired atm he's spent most of the last 2 days sleeping. Now they're saying he's got to have a ct scan to make sure he's not bring damaged. The hospital doesn't want everyone ringing up as they rather deal with 1 person which is his wife but she doesn't seem to be getting much info off of them. Now I feel like it's a huge set back. His chest is still bad with secretions that need to be brought up and on antibiotics for yet another chest infection. Feeling abit deflated today. I'm on a 14hr shift at work and this is playing on my mind now. I think I'm gonna have to try ringing them tonight just for some clarification. Sorry about the long winded whiney post.

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Lf91 profile image
Lf91
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16 Replies
Marcita profile image
Marcita

I think you need to discuss with his family and choose someone else to get the phonecalls from the hospital. Someone who can ask questions and know better what's going on.

My aunt used to receive the calls and she was not making the right questions leaving me clueless so she started to include me in the calls so I could ask the questions.

I think your FIL is doing better than my mom somehow, he can even stand up... And they never said she was taking too much time. They just said she was taking HER TIME...

Lf91 profile image
Lf91 in reply toMarcita

I don't want her to feel like I'm taking over. It's such a hard time. I'm hoping things will start to turn around soon. I'm going to write some questions down and ring them later.

Ferham profile image
Ferham

If you have the password the staff will speak to you , or maybe your wife if it's your FIL. The cases are now much quieter where I am in the West Midlands so we are now able to speak to the team rather than the liaison team we initially had at the peak . Hopefully it's quieter where you are .

If he stood up he possible is exhausted it's draining for them . My husband was slow at coming round and also had a CT head scan, they are just ruling things out . Your MIL may not want to ask some questions as she doesn't want to know the reply . I'm sure he is doing fine, it's just a long process .

Lf91 profile image
Lf91 in reply toFerham

We have the password. But I haven't rang for a while as last time they refused to speak to his wife as they had already spoken to me and it was understandably very upsetting for her. We are in Mansfield Notts so East Midlands but he was transferred from our local hospital to lincoln a few weeks ago.

I thought he would be exhausted too but with him still being agitated and going for a CT scan they will have to sedate him again which is going to delay and progress he may make. I'm going to write some questions down and ring them later

Heartgal151 profile image
Heartgal151

Hi,

My dad is now home having been gravely ill on a ventilator with covid.

On the first occasion that he had physio post ventilator, he slept for 2 days solid afterwards. The nurses were shocked but that’s literally how much it exhausted his body. Even now he is home the fatigue and exhaustion is the biggest roadblock in his recovery as he is exhausted after very little exertion.

I’d say not to worry too much about his progress for now, this is very new and the doctors and nurses don’t know a lot about the recovery process. Baby steps xxx

Lf91 profile image
Lf91 in reply toHeartgal151

Wow fantastic news about your dad! I remember commenting on one of your posts previously!

He's still on the vent though, he's been in 56 days now! 😞 But what you've said about the Dr's and nurses not knowing much about it as it's a new virus this is what I've said. How do they know he should have progressed more with it being so new? I've read that it affects everyone differently.

Hes still having dialysis so could this slow the process? I've no idea.

Sometimes it just feels like there is no light at the end of the tunnel. But he's still here and he's still fighting. X

Heartgal151 profile image
Heartgal151 in reply toLf91

Dialysis would definitely slow things down, I seen a huge improvement in my dad when he came off the dialysis. I think because it causes the drugs to be in the system much longer etc while the kidneys are sluggish then it affects everything else!

A really awful negative consultant told me that my dad wasn’t making the required progress and that it was very much 50/50. I was so upset as his oxygen levels had been coming down, talk of reducing sedation etc so I couldn’t see how they could say he wasn’t making progress! I actually went a bit nuts on the phone. The consultants are always giving worst case scenarios, try to hold on to hope he can absolutely do this xxx

HopefulA profile image
HopefulA in reply toLf91

I know it's so hard and the uncertainty makes it tough. We read into everything the doctor and nurses say and hold on to that but like you say this is so new that I think they end up going to worse case scenario.

Just remember whilst he is fighting and breathing there is always hope and it sounds like he has defo made progress!

here anytime you want to chat xxx

HopefulA profile image
HopefulA in reply toHeartgal151

Aww how is he doing Heartgal151?

Your dad recovering has kept giving me hope that my dad will make it too xxx

Heartgal151 profile image
Heartgal151 in reply toHopefulA

He’s doing way better than anyone ever expected, the doctors are nurses are astounded at his progress. He still feels like he’s behind though for some reason he’s desperate to just get back to ‘normal’ and not realising how ill he’s really been! He’s driving, can walk short distances etc however is still having some flashbacks, aches and pains and headaches.

It’s a long road but hope is there xxx

HopefulA profile image
HopefulA in reply toHeartgal151

Wow that is amazing, well done to your dad!

His strong willpower has helped aid his recovery so far by the sounds of it and I bet he will continue to make great progress!

Lots of love💜

Mccarthy0702 profile image
Mccarthy0702 in reply toHeartgal151

Wow he’s sounds like he’s doing amazing so far in such a short time . Your dad sounds like mine , I can only imagine the struggle once they get home that everything doesn’t go back into place for a while xx

PeterJu profile image
PeterJu

Hi. Don't worry about being whiney,! you are just concerned and it looks like you are having to filter all info. through one person who is equally concerned.

5 weeks ago, I was in ICU with covid and on a ventilator for 9 days. My recommendation is that you and your family write up the questions you have for the one call in advance and the answers are written down.

When i was in only one person could ring which was my wife. I know this is concerning but if you saw it from where I saw it (a hospital bed), you would see that Doctors and nurses often have a choice between answering phones and literally doing life saving interventions. Obviously the decison rests with you.

very best wishes to you and yours and of course your father in law

Lf91 profile image
Lf91

Thanks everyone. He had is CT scan yesterday and that came back clear which is great. They had to heavily sedate him again and give him some drugs to paralyse him as he was too agitated for the scan. They took the sedation straight off of him again but now we just need to wait until he wakes up again x

Not asking the 'right' questions could just be down to your MIL being stressed and concerned about her husband. I know when my father was in ICU, his wife, my stepmother, all that mattered to her was that he was comfortable and not in pain, but then again she was 81 (older now) and not aways able to remember to ask questions. My stepmother would visit my father, her husband everyday and thus we would ring her to get updates. Many times she either forgot to ask or could not remember what the doctor told her (her mind is 100%).

The rest of the family started to get frustrated because they were asking questions that were not getting answered and like yourself, none of us wanted to be seen as 'taking over'. Fortunately for the family her daughter in law (married to her son) was sensing the families frustration and started to take on the responsibility of asking the ICU team the questions. Her DIL was the one who was driving my stepmother to the hosptital everyday and helping her (she has slight mobility problems) so the DIL was in the position to ask the questions without it being an imposition on my stepmother.

Mattpl_giles profile image
Mattpl_giles

I totally agree about writing things down. My Dad has been in ICU with Covid for seven weeks now and at the start it was so complicated to remember who said what when especially with the doctors changing constantly as well.

We now keep a diary with the date, the doctor we spoke to, everything they said that day, a section under it is the questions we then think up for the next day. This means we can then also look back and track progress ourselves. This might help if you feel you aren't getting answers to questions you might want to ask as you have them prepared for the next day and when you look back it might have already been answered and the info just not passed on. Also, its difficult with the doctor changing constantly so sometimes you have to wait to ask a more engaging doctor some of the more detailed questions you might have... Luckily my Dad is the only person in the Covid section of the ICU of that hospital so the doctors ring us daily and the nurses set up facetime on his good days etc...

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