- Joined
- Jul 25, 2015
- Messages
- 1,606
- Reason
- CALS
- Diagnosis
- 07/2015
- Country
- US
- State
- tx
- City
- Dallas
Steve is finally sleeping for the first time today. The procedure went well with a couple of minor issues. While in surgery the doctor found some small spots on his stomach so took a biopsy. When he got into recovery he was cough in up a lot of fluid. Although I guess that could be good.
The decided he needed to stay overnight. His blood pressure keeps going up even though he is very calm. At or time it was 152 over 102. That's high for him. He just had his first feed and it went well.
The staff have all been very nice but not its time for my frustrations. No one who has cared for him other than the doctor has any knowledge of ALS. The nurses tried to give him oxygen and did not even know what the Trilogy is and that includes the respiratory Nurse. One nurse asked him if he was a stroke victim and he was in her care. I was extremely nervous about even leaving for the bathroom.
I know ALS is rare but it would be helpful if those who are directly involved and taking care of these patients would do a little crash course or look it up. No harm done but I would never leave him alone. I hope he is well enough to go home tomorrow.
I want to thank everyone for their thoughts and or prayers. Another chapter has been completed and we are both learning to be as positive as possible when faced with challenges. Just as I was typing this they took his vitals and his temp is 101. Here comes another challenge.
The decided he needed to stay overnight. His blood pressure keeps going up even though he is very calm. At or time it was 152 over 102. That's high for him. He just had his first feed and it went well.
The staff have all been very nice but not its time for my frustrations. No one who has cared for him other than the doctor has any knowledge of ALS. The nurses tried to give him oxygen and did not even know what the Trilogy is and that includes the respiratory Nurse. One nurse asked him if he was a stroke victim and he was in her care. I was extremely nervous about even leaving for the bathroom.
I know ALS is rare but it would be helpful if those who are directly involved and taking care of these patients would do a little crash course or look it up. No harm done but I would never leave him alone. I hope he is well enough to go home tomorrow.
I want to thank everyone for their thoughts and or prayers. Another chapter has been completed and we are both learning to be as positive as possible when faced with challenges. Just as I was typing this they took his vitals and his temp is 101. Here comes another challenge.