ICU 48, trachi weaning and weakness

[Westbeginners1]

hi everyone,

Thought I would share an update on my mum for anyone who has been following our story. I find this group very helpful in our journey and appreciate all the comments and support we receive - so thank you everyone!

Mum is doing ok, slow and steady the doctors say . Just calculated she is on day 50 in hosp and 48 in ICU. All her infection levels are down and have been a little while so she is not going for another ct at the moment. She is on 3 antibiotics, they are going to stop 2 as off tonight and the other in a couple days, that will then show if there is still something there if the markers go up again.

She’s doing well on the trachi, maybe about 4 days ago they moved her to a optiflow machine (not a ventilator but still helps breathing, a lot of people get it after a operation) for 1 hour a few times a day, she has been doing well on that. Today she got moved to a Swedish nose on the ventilator for 1 hour, not sure if anyone is familiar with that, she breathes on her own but it delivers humidified air and got so much secretion up! They had to suction her 7 times in ten mins but so good to get it all off her chest.

The consultant said today their biggest concern was how weak my mum is, one hour on this machine and she was fast asleep. She thinks a couple more weeks building her strength up with breathing. Although I would expect this after 5 weeks intubated! But she didn’t sound as if that would have been a big obstacle

She has not been on sedation for maybe a week now but has been giving medication still to help with her delirium, she’s not agitated anymore but seems very much in a world of her own still, staring into space, responding when you chat but not to much.

Hopefully we are now on the right path! Although they say it will be a very slow process I will take that over nothing!

ICU is a definite rollercoaster!

[Frazzled88]

Hi there Westbeginners1

Tracheostomy, Optiflow then Swedish Nose are all familiar things in My husbands journey.

Hopefully they will soon be putting the cuff down on the tracheostomy and adding a speaking valve for a minute or so and then your mum will be able to whisper her first words to you. That is a most emotional moment.

I wish you and your Mum strength for your journey

Frazzled 🙃

[Sepsur]

🍀🤞🏻your Mum carries on moving forward like this

[Copse77]

Wishing all the best for your Mums recovery

[ForMyPapa]

Hello,

Thank you so much for sharing your story. Me and my dad are on the similar path, but you guys are a little ahead, so it is really helpful to learn about your journey.

This week was my dad’s third week in an ICU and it has been very difficult journey. His pneumonia was getting better with ventilator in week 2 (at first awake and with mask type and later induced coma with intubation), but he coughed hard in the middle of the week and that caused a hole in his lungs. The air leaked and his pneumonia got worse than before. Since then, he continued with the same treatment but the doctors do not see any significant improvement…. Now we are in week 3 in ICU and the doctors said he may not be strong enough to continue the treatment if his lungs won’t improve in a week or so… I am praying for a miracle to happen.

Knowing that other people are going through this makes me feel less lonely. Please keep on posting about your mum.

[Westbeginners1 in reply to ForMyPapa]

Good morning,

I am so sorry to hear about your dad. I have never experienced ICU before, it is a very scary journey. I am an only child to so don’t have many people to lean on, that’s why I found this group so helpful.

My mum is now going into week 9 in ICU and only now showing improvement. Just a few weeks ago they told me they didn’t think she was strong enough to survive because she was intubated for so long her chest muscles got so weak. They told me the only chance she had was a tracheotomy and even then it would only be a very small chance of survival.

Fast forward 3 weeks and the tracheotomy has now been removed and she is breathing completely on her own and slowly starting to move her arms and legs etc. they are also chatting about moving her to a ward this weekend!

My advice would be to push the doctors to give your dad as much time as possible. My mum was on continuous anti biotics for 6 weeks, the doctor told me she had never seen anyone on continuous antibiotics for so long but it worked!

When the time comes try to get him a tracheostomy, I believe this is what saved my mums life.

Please feel free to message me anytime during your journey. I know all the thoughts that go through your head and if anything I can listen and relate.

Hope your dad improves x

[ForMyPapa in reply to Westbeginners1]

Thank you so much for your message. I am so happy to hear that your mum is doing well. That brings me such comfort! Discussing getting out of ICU must be such a relief for you!

Today, my dad seemed tiny bit better, but there is no official update from the staff. His oxygen was lowered to 60%. Last week, they had to increase it up to 75%, so this is progress compared to that. He is still intubated and they initially implied that he can do this for 1-2 weeks.... It's been a little bit more than 2 weeks now. But I will take up on your advise and ask the doctors to give us time as much as possible.

This is such a difficult journey to take alone, so I am so grateful to find this community. My family is small but we are there for each other and I am grateful for that. But it's hard for us to keep on talking to each other about dad's condition 24/7. My mom prefers to talk less as it stresses her out so much. I, on the other hand, may need to talk and process more often.... Everyone is different. So I appreciate connecting with you.

Thank you.