adkdreams
Active member
- Joined
- Jan 8, 2010
- Messages
- 72
- Reason
- CALS
- Diagnosis
- 08/2007
- Country
- US
- State
- New York
- City
- Bloomingdale
So looking for advice. Don is once again sick with a respiratory infection Bronchitis this time and just got over pneumonia a few weeks ago. He has refused the cough assist adn won't let me use the bi-pap during his coughing episodes. This last one has been the worse he refuses or tries not to cough because it causes him to have facial spasms and he bites his tongue or lips really bad. The other night I watched him turn blue 4 times in a matter of an 1 1/2 hour episodes (his legs and lips).
I feel so helpless when this happens as I can't do anything for him he just wants me there which is more then fine but it is starting to worry me as I still work full time and the kids will be returning to school shortly and no one will be home. Generally when he is not sick he is fine but two in a month of respiratory issues has me very worried.
He has lost his primary care physician and the end of July due to retirement and are now in limbo seen two different doctors this week in the group and they both freaked me out. One said if not any better he would put him in the hospital in two days if not better on oral antibiotics. Hence no better but that doctor not available see the NEW doctor on Thursday, he says no need to be in hospital can do everything at home. YEAH this makes me happy but then he says you MUST see a pulmonlogist within the week to talk about a trach. OMG where did this come from? We just where at the ALS CLinic in June and they had no concerns of his respiratory functions.
So we are both looking at each other scared *#@*less. No pulmonlogist will see him where we live until October and the covering nurses for the regular ALS CLinic nurse are so clueless. Thank God we have a scheduled appointment this Wednesday there.
However on the happy side Don is now doing the cough assist 4 times a day with suction and he has learned after just one time during his coughing episodes that the above work. I guess sometimes the PALS just have to come to terms with changes slower then we do, but so frustrating watching him struggle to breathe.
Thank you for listening/reading and thank God for everyone on this forum.
Jodi
P.S. Joel C. I have deceieded in my mind you are the wise one and so enjoy your wisdom for adaptation, got any for that facial spasms he is having that would prevent him from clinching down and biting his tongue or lips during one of these episodes? Have tried a mouth guard but it makes it even worse makes him gag. Thank you
I feel so helpless when this happens as I can't do anything for him he just wants me there which is more then fine but it is starting to worry me as I still work full time and the kids will be returning to school shortly and no one will be home. Generally when he is not sick he is fine but two in a month of respiratory issues has me very worried.
He has lost his primary care physician and the end of July due to retirement and are now in limbo seen two different doctors this week in the group and they both freaked me out. One said if not any better he would put him in the hospital in two days if not better on oral antibiotics. Hence no better but that doctor not available see the NEW doctor on Thursday, he says no need to be in hospital can do everything at home. YEAH this makes me happy but then he says you MUST see a pulmonlogist within the week to talk about a trach. OMG where did this come from? We just where at the ALS CLinic in June and they had no concerns of his respiratory functions.
So we are both looking at each other scared *#@*less. No pulmonlogist will see him where we live until October and the covering nurses for the regular ALS CLinic nurse are so clueless. Thank God we have a scheduled appointment this Wednesday there.
However on the happy side Don is now doing the cough assist 4 times a day with suction and he has learned after just one time during his coughing episodes that the above work. I guess sometimes the PALS just have to come to terms with changes slower then we do, but so frustrating watching him struggle to breathe.
Thank you for listening/reading and thank God for everyone on this forum.
Jodi
P.S. Joel C. I have deceieded in my mind you are the wise one and so enjoy your wisdom for adaptation, got any for that facial spasms he is having that would prevent him from clinching down and biting his tongue or lips during one of these episodes? Have tried a mouth guard but it makes it even worse makes him gag. Thank you
