Recent content by Cherise77

Yes, we’re here. The tube was taken out yesterday but within a couple hours he needed BiPap with oxygen at 70%. At that time he said he doesn’t want to be intubated again. Right now he’s comfortable being given morphine and Ativan. They have turned oxygen to 50% now and he’s tolerating that...

Yes, we’ve been with him the whole time. Except late at night when they kick us out.

My Dad was intubated last night, just a few hours after getting to the ICU in Canada. He had tested positive for Covid in Seattle before he was transferred. He now has Covid pneumonia on top of everything else. Has anyone in here been intubated before or your pALS and successfully gotten...

He’s at the hospital now on a V60 ventilator. A BiPap, oxygen, nebulizer. It seems to be helping bringing his oxygen up but his heart rate is still high. CT scans and X-ray show large amount of bacterial pneumonia. He wants to get home so we’re trying to arrange an ambulance transfer to get...

He has a BiPap. He’s been using for sleep for about 3 years now. I’ll pass on the setting changes they should make to my Mom, thank you. Right now the doctors on the ship are alternating between his BiPap and oxygen. I’m a little worried about the oxygen as I’ve heard that CO2 can build up...

We don’t know yet. I think the doctors on the ship are still trying to confirm where they can take him. Somewhere in Seattle. Blood work doesn’t show an infection but they have him on IV antibiotics anyways. The X-ray shows his lungs are full of fluid. Would this be because of mucus plug? I...

My Dad is not doing good. My parents are on a cruise right now. We all tried to talk my Dad out of going but he wanted to go as his brother and sister were going and they’ve never all been on a trip together. My Mom just called this morning to tell us my Dad is in the hospital on the ship and...

Thank you everyone for your advice. We appreciate the support. My Dad is on antibiotics again and had a better sleep last night. This is a terrible cycle we’re in but every time he starts antibiotics there is some relief for a couple weeks and then the terrible coughing and struggling at...

Thank you @Tomswife That sounds like it would be very helpful! Frustrating that his doctors don’t recommend devices that can obviously help. I’m going to get one for them to start using. I appreciate your help with this.

Thank you for responding. May I ask what your FVC scores were when you got the trache? My Dad’s last test in January was 58% standing and 20% laying down. Also if you don’t mind answering how often is your tube changed out? And does it hurt? His Respirologist is trying to talk him out of a...

Thanks for your response. Have fun do you put the suction device into his mouth/throat? Our respirologist said they didn’t need one as he isn’t having saliva pool in his mouth. Are you using it for mucus though?

We’re entering a very scary and sad stage of my Dad’s ALS journey. Since October 2022 he’s been having coughing episodes. Several a day, lasting an hour or two at a time. At night is the worst. He’ll wake up gasping for air, choking on mucus. My Mom has to take his BiPap off, sit him up...

Thank you! My Dad feels much better knowing there is an option that doesn’t involve being intubated. He had his CT scan yesterday in preparation for his feeding tube. Hopefully his stomach is sitting below his ribs so he can have RIB procedure.

My Dad is scheduled for his feeding tube on January 12. He is very nervous and is thinking of not getting it. His breathing is 48% when he’s standing and 20% when he’s laying down. He can’t lay down flat without his biPap but he doesn’t use it in the day time only for sleep. Because of his...

Thank you for all the responses. I’m discussing with my parents now. I believe the right route is two separate beds as it sounds like being able to access my Dad on all sides will be important. We appreciate your help and guidance as we navigate another stage with this terrible disease...