HalsWifeFran
Active member
- Joined
- Apr 30, 2010
- Messages
- 70
- Reason
- CALS
- Diagnosis
- 08/2009
- Country
- US
- State
- CA
- City
- Santa Barbara
I have so much to say! It's been hard to find time to go online these past two weeks! Hal is in bed now, alarm outside his door, let's see what I can do!
Caregivers perspective here:
Today, I feel really bad that I encouraged Hal to get the tracheostomy NOW.
Hal and I both have always planned for him to have the trach when it was time. The problem is, how do you know when it IS the best time - not too early and not too late - If you wait too long, then it's more difficult to recover from the trach proceduere. It is also more difficult and stressful to learn how to suction, care for the trach, etc, when the person with ALS is in bad shape. However, if you don't wait too long, then you never know if you could have "gotten by" safely for a few more weeks, a few more months, maybe even a year, without having the trach.
Before getting the trache, Hal never complained about shortness of breath. His breathing was not an issue to him. I, however, always seem to his progressive changes before he does. I noticed that he was frequently winded after minimal movement. I worried about how frequently he choked on his saliva. So I encouraged him to see his pulmonologist last month, barely over one week after the previous check up. The appointment was March 28. That same day, earlier, we learned htat Hal's mother had died. Terrible day. The pulmonologist was not able to get any actual test numbers - no FVC, no blood gases - and he pushed us into having the trache done ASAP - he wanted to check Hal into emergency that same day! We put it off until after Hal's mother's funeral.
The procedure was done April 12, 11 days ago. Hospital experience was horrible. Not that nurses are mean - but Hal could not speak, nurses are too busy, and no one took time to try to figure out what Hal was trying to communicate. So I spent day and night in his room. Slept on a chair in ICU and later on a cot when he was moved out of ICU. A terrible week! I won't go into the many, many mistakes made even with me there. Here are just two: Second day post-op in ICU, after a change in staff, the night nurse almost gave him double meds while I was out of the room - the day nurse had forgotten to chart the evening administration! Hal tried to stop the nurse, I walked in and was able to do that just in the nick of time. Another mistake: First day post-op we were informed that Hal had tested positive for MRSA. Tape around the room. Everyone had to wear gowns, masks, gloves. Even I was supposed to do that. Felt like Hal was a pariah. I kept pressuring the hospital to re-test his sample. Our doctor finally helped make that happen. After four days of isolation treatment, turns out it was a mistake! Hal did not have MRSA.
So now here we are, 11 days post-op. Home, hurray! Hal is still much weaker than he was before surgery. He is much more uncomfortable. I cannot leave him alone unless I have someone who can take over with a sterile suctioning procedure. So far that has only been paid for LVNs. Speech is almost non existent, whereas before the trache, he could talk - it was just difficult to understand him. We use the ventilator only at night. It's unpleasant, but Hal is getting used to it. During the day, he breathes through the trach. Messy. Lots of secretions.
The good news: Hal is getting stronger every day. He is needing suctioning less and less frequently. Last night, only twice. During the day, internal suctioning maybe 8 times, although we do external/ non-sterile much more frequently.. And after Hal heals, he will be able to be suctioned more easily, and it won't have to be sterile, so I'm hoping to train some family or friends to help out.
Am I glad we did this now? NO! NO! NO! (Did I say "No?")
The problem is, I can't see into the future. Maybe Hal would have been fine without a trach for a relatively long time. And maybe not. I'm not a gambler. I want Hal to stay alive! Doing this early is a chore. It's unpleasant. It's difficult. Hal has lost some more of his independence. Hal suffered damage to his heart or lungs or brain. And he recovered quickly - out of the hospital and back home in one week. We will get used to his new limitations. We have to. And they would have happened at some point, anyway.
But I am very sad. I caused this. Poor Hal.
Caregivers perspective here:
Today, I feel really bad that I encouraged Hal to get the tracheostomy NOW.
Hal and I both have always planned for him to have the trach when it was time. The problem is, how do you know when it IS the best time - not too early and not too late - If you wait too long, then it's more difficult to recover from the trach proceduere. It is also more difficult and stressful to learn how to suction, care for the trach, etc, when the person with ALS is in bad shape. However, if you don't wait too long, then you never know if you could have "gotten by" safely for a few more weeks, a few more months, maybe even a year, without having the trach.
Before getting the trache, Hal never complained about shortness of breath. His breathing was not an issue to him. I, however, always seem to his progressive changes before he does. I noticed that he was frequently winded after minimal movement. I worried about how frequently he choked on his saliva. So I encouraged him to see his pulmonologist last month, barely over one week after the previous check up. The appointment was March 28. That same day, earlier, we learned htat Hal's mother had died. Terrible day. The pulmonologist was not able to get any actual test numbers - no FVC, no blood gases - and he pushed us into having the trache done ASAP - he wanted to check Hal into emergency that same day! We put it off until after Hal's mother's funeral.
The procedure was done April 12, 11 days ago. Hospital experience was horrible. Not that nurses are mean - but Hal could not speak, nurses are too busy, and no one took time to try to figure out what Hal was trying to communicate. So I spent day and night in his room. Slept on a chair in ICU and later on a cot when he was moved out of ICU. A terrible week! I won't go into the many, many mistakes made even with me there. Here are just two: Second day post-op in ICU, after a change in staff, the night nurse almost gave him double meds while I was out of the room - the day nurse had forgotten to chart the evening administration! Hal tried to stop the nurse, I walked in and was able to do that just in the nick of time. Another mistake: First day post-op we were informed that Hal had tested positive for MRSA. Tape around the room. Everyone had to wear gowns, masks, gloves. Even I was supposed to do that. Felt like Hal was a pariah. I kept pressuring the hospital to re-test his sample. Our doctor finally helped make that happen. After four days of isolation treatment, turns out it was a mistake! Hal did not have MRSA.
So now here we are, 11 days post-op. Home, hurray! Hal is still much weaker than he was before surgery. He is much more uncomfortable. I cannot leave him alone unless I have someone who can take over with a sterile suctioning procedure. So far that has only been paid for LVNs. Speech is almost non existent, whereas before the trache, he could talk - it was just difficult to understand him. We use the ventilator only at night. It's unpleasant, but Hal is getting used to it. During the day, he breathes through the trach. Messy. Lots of secretions.
The good news: Hal is getting stronger every day. He is needing suctioning less and less frequently. Last night, only twice. During the day, internal suctioning maybe 8 times, although we do external/ non-sterile much more frequently.. And after Hal heals, he will be able to be suctioned more easily, and it won't have to be sterile, so I'm hoping to train some family or friends to help out.
Am I glad we did this now? NO! NO! NO! (Did I say "No?")
The problem is, I can't see into the future. Maybe Hal would have been fine without a trach for a relatively long time. And maybe not. I'm not a gambler. I want Hal to stay alive! Doing this early is a chore. It's unpleasant. It's difficult. Hal has lost some more of his independence. Hal suffered damage to his heart or lungs or brain. And he recovered quickly - out of the hospital and back home in one week. We will get used to his new limitations. We have to. And they would have happened at some point, anyway.
But I am very sad. I caused this. Poor Hal.