My mom has been on a ventilator for 2 weeks now. They tried to wean her off sedation everyday but she only lasts 1-2 hours until her heart rate goes up to 130s. 3 days ago, they noticed that she did not make small movements of her arms and legs like they used to. They consulted with a neurologist and they ordered a CT scan and EEG of her brain. They found out that she had a stroke on her cerebellum. Unfortunately the CT scan view is limited. An MRI will let us know more about the extent of the stroke but we are unable to do that at this time because she still has covid. The neurologist did say she is not brain dead and she is not having seizures which is a good sign. Unfortunately we cannot do anything else at this point. Yesterday, they were able to take off mom's sedation for 8 hours! I was really happy and thought she's moving in the right direction. She still did not open her eyes but only responds to pain, her pupils react to light, and she has gag reflex.
I just got off the phone with the intensivist and basically he's saying that mom not waking up/opening her eyes is not a good sign and was not giving us much hope. I've seen some stories here and other websites of covid ventilator patients taking time to wake up from a coma so I asked the doctor to please give my mother more time. They've only aggressively tried to wean her off in the past few days and until now she's on a continuous drip of sedation and pain medication (propofol and fentanyl).
For those who experienced or had family members who were on a ventilator with covid, once the sedation and pain medications were turned off. How long did it take for them to open their eyes? It seems like the doctor is pointing us towards the direction of giving up but I'm still praying and hoping for a miracle in my mom's life.
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I wasn’t a COVID patient but an ICU patient following a heart operation. I was slow to come round, I was ventilated / sedated for 6-8 weeks. I just didn’t want to come round and the family were called in several times because I wasn’t expected to make it. I came home mid March and continue to recover.
Hi sorry to hear you are going threw this my dad was on a ventilator for two weeks it’s kind of the same as your mom except he was not responding to anything anymore he had a gag reflex and a cough but that was it they had him off sedation for 3 days and still nothing all I can say is don’t give up you don’t want to live with the what if because believe me the doctors and nurses tried everything to get me to give up on him but I didn’t I did everything in my power to save him but one thing we cannot do is go against gods will in total my dad was hospitalized with covid for a little over a month he was a dnr so eventually all the medications he was on tired his heart and he went to be with god but like I said donot give up on your mom I strongly believe in miracles and if she’s responding to anything donot give up my dad wasn’t responding to anything and I still did not give up where there is life there is still hope ❤️
Thank you so much for your words of encouragement. All I hear from the doctors and nurses are pushing me to consider giving up on her. This site has been really helpful in giving me a little hope by reading stories of people going through the same.
Hello, I'm so sorry you are going through this. My husband was on a vent for over 30 days, it took over a week for him to open his eyes and then over 3 weeks to come out of the delirium haze . It also took 30 days for them to lift the sedation, the amount of sedation holds they tried on him I have lost count . We got there eventually, we had many dark moments where we didn't think we would get him home ( 3 months later ) . Please don't give up hope. There are several of us on here that have been in your shoes . HopefulA MarthaKos DrARDS and several more .
Thank you so much. All I hear from doctors and nurses are the worst case scenarios. She’s only been on the vent for 2 weeks and your stories have inspired me not to give up on her just yet.
yes don't give up, it's a long journey and a complete rollercoaster but you have to keep fighting for her and don't lose hope.
Like Ferham said we have all been there, those awful conversations where they tell you it's looking very unlikely but our loved ones were fighting so we fought with them.
Hi, I’m so sorry to hear you are having such a worrying time. My husband was in ICU for 9 weeks, 6 of them on a ventilator. It took weeks to wean him off completely and it was very slow, taking him off for an hour at a time. After sedation was switched off it took him 3 weeks to start waking up. His pupils were reacting and his head CT was clear but he didn’t react to any stimuli. The doctors kept saying he should have woken up by now. But eventually he did start opening his eyes, although they didn’t see anything. Then he started looking at the nurses and blinking. It seemed like forever waiting for him to regain consciousness. He had a tracheostomy after 3 weeks on ventilator. So please don’t give up hope. So many of us have been in the same boat, as Ferham says.
Thank you. So much is unknown in this disease and I understand that the healthcare professionals are doing the best they can. Sometimes tho it’s hard for them to see through a sick person not knowing the life they lived prior to being sick. I just want them to give my mother a chance and the stories and words of encouragement I see here helps me get through and take things day by day.
If you are not happy with the team caring for your Mum as feel they are being pushy and impatient with you, negative and trying to get you to consent to things you do not want to happen to your Mum, request another team, or other staff removing the problematic ones. Speak to Pals online/phone call if unhappy. Don't let anyone bring you down about your Mum or be attempting to get you to give up on her. Can I ask how old your Mum is?
Is your Mum still full of pain meds, off ventilator or on it? In coma still or out of that and taking a while to wake? Your Mum may take as long as 6 - 8 weeks to fully wake up. The hospital staff as good as they may be do need to back off a bit and give you and your Mum space and time. Some people wake instantly, others take weeks and weeks and in their profession that is something they should already know. Hope you are UK based not facing huge medical bills as that will make doctors pushy if they think money going to run out or insurance won't pay out, or cover isn't going to cover. Never give up on your Mum, even if they tell you she has brain damage or is brain dead. Never listen to them, they are naysayers thinking more of bedspace. If your Mum eventually goes to a ward you personally must inform every flipping member of staff you see on the ward that your Mum is out of ICU/HDU and needs a lot of extra care. You will be surprised by what wards are not told about new arrivals to the wards. The nurses didn't know I was just out of ICU way to early & induced coma not expected to survive. They had no clue, I couldn't do anything for myself, my centre of gravity was gone, was falling half out of bed head dangling just millimetres or inches from floor unable to pull myself back up due to muscle wastage and extreme weakness. Couldn't feel my legs, they didn't exist, couldn't walk, could barely speak to even be understood or heard due to vocal cord damage. Would be sat up in bed and fall flat face down into my lap suffocating in the blankets or fall side ways ending up dangling over end of bed even with sides up, which rarely were. Don't give or or be made to feel like you should be giving up. Stay positive and talk, read, sing, play music to your Mum but talk louder as remember she may be in the same room, but she is far far away as if submerged under water, deep deep down, but rises to just below or to the surface briefly when she hears you or feels you touch her. Touch her face more as the rest of her body make still be paralysed from all the drugs. Don't listen to naysayers. Xx
She is 76 years old but she does not look and feel her age. We’ve traveled together and go on hikes so she’s not this fragile old lady that the doctors paint her out to be. Few days before she was hospitalized we would walk on the beach with our dogs. She deteriorated there in the hospital.
She is still unresponsive in a coma. Unfortunately this morning they had to increase her ventilator again to 100% and the doctors increase her dose on sedatives and pain medication because she couldn’t tolerate the weaning off process. She developed some sores on her face already from the ventilator tubes. It hurts so much to see her in this situation. If only I can take some of her pain away. Unfortunately, we are still not allowed to visit her in the hospital so I just saw her through the iPad and talked to her. I am still hoping and praying for a miracle in her life. I am 6 months pregnant and she was so excited to meet her granddaughter. Thank you so much for sharing your story. When all I hear from doctors and nurses are negative I go to this site to find stories to inspire me and remind me that other people went through the same and survived.
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