Pooja Dhamor
Member
- Joined
- Nov 22, 2021
- Messages
- 10
- Reason
- CALS
- Diagnosis
- 10/2021
- Country
- IN
- State
- RJ
- City
- Jaipur
Hi, my father was diagnosed with probable ALS in October 2021 - this diagnosis was later confirmed. He has been on Riluzole since October 2021. He has lost complete mobility in upper limbs and has been having breathing, swallowing and speaking problems (among other issues) for quite a few months. He has been using BiPAP for almost a year (used only in night initially and now uses throughout the day). In light of his swallowing issues, in consultation with his doctors, we got him an NG tube day before yesterday (on December 24). He was extremely uncomfortable with the same and found it suffocating, but he let it go assuming that it might need some time to settle - however, he asked us to remove it ASAP at around 3 AM (after 6-7 hours).
After removing it, he went to sleep within 5 minutes. However, he has been sweating a lot ever since. Today, when he was feeling suffocated, we checked his pulse and oxygen using oxymeter and it was in 90s and 120 respectively. My brother tells me that at some points, it even dropped to 70s (when he walked for a minute to go to washroom and get back). He was then rushed to hospital and has been put on oxygen with BiPaP. The nurse there informed us that his blood oxygen is quite high.
We have not gotten a private room - he is in the ICU with 7-8 other patients, no relative (relatives not allowed near him in this room), with no mobility while laying down and extremely muffled and slurry speech. He feels very anxious without my mother around him. The hospital staff has not let anyone near him. At this point, it just seems like I am venting aimlessly. My question was if anyone has any advice on what is the best way to go? what is next? what are the questions we should ask our doctors and discussions to be had? any insight will be very helpful!
Thanks for reading this huge message.
After removing it, he went to sleep within 5 minutes. However, he has been sweating a lot ever since. Today, when he was feeling suffocated, we checked his pulse and oxygen using oxymeter and it was in 90s and 120 respectively. My brother tells me that at some points, it even dropped to 70s (when he walked for a minute to go to washroom and get back). He was then rushed to hospital and has been put on oxygen with BiPaP. The nurse there informed us that his blood oxygen is quite high.
We have not gotten a private room - he is in the ICU with 7-8 other patients, no relative (relatives not allowed near him in this room), with no mobility while laying down and extremely muffled and slurry speech. He feels very anxious without my mother around him. The hospital staff has not let anyone near him. At this point, it just seems like I am venting aimlessly. My question was if anyone has any advice on what is the best way to go? what is next? what are the questions we should ask our doctors and discussions to be had? any insight will be very helpful!
Thanks for reading this huge message.
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