We had a care meeting with some of the staff today at Pacific Specialties. Mom was off the vent and using her Passy Muir valve, so she could talk and participate fully in the conversation. And she talked quite a lot. She sounds great. It doesn't completely sound like her, still raspy, but definitely functioning and very helpful. It was a joy to hear her talk and get her direct point of view about her care there, what she likes, what she needs, etc.
She has been doing 8 hours off the vent each day (4 hours in the morning and 4 hours in the evening). I think they'll keep it at that level for a few days before they increase the time again.
PT has been very impressed with her and her progress the last few weeks. She's been sitting on the edge of her bed unassisted for up to 35 minutes at a time. She has been needing less assistance going from the bed to the chair and back (no more hoisting mechanisms, just her own strength/movement with the help of 2 aides).
Thursday, August 18, 2011
Monday, August 15, 2011
progress report
7 hours off the vent on Friday (4.5 hours in the morning and 2.5 hours in the evening).
Stood up for 30 seconds, moving from the chair to the bed (assisted only for stability).
5.5 consecutive hours off the vent on Saturday - longest stretch so far!
Speech therapy continues to work with her 2x a week or so. Her voice is getting stronger and smoother.
Doing great!
Stood up for 30 seconds, moving from the chair to the bed (assisted only for stability).
5.5 consecutive hours off the vent on Saturday - longest stretch so far!
Speech therapy continues to work with her 2x a week or so. Her voice is getting stronger and smoother.
Doing great!
Wednesday, August 3, 2011
Tuesday, August 2, 2011
4-6 hours off the vent!
It's been a frustrating AND exciting week. I'll skip right to the good stuff:
Mom is doing very well and making tremendous progress in her weaning. She was off the vent for 2 hours yesterday without any problems or stress. Today she did at least two, but I haven't gotten an update to confirm exactly how long. Her oxygen levels and CO2 levels were perfect and they even did speech therapy with the voice valve while she was breathing on her own.
PT is also going well, but I don't have many details. I know she's been up in her chair everyday for and hour or two at a time.
We've been trying to figure out why Pac Spec hasn't been aggressive with her weaning over the past few weeks, since Mom seems so strong and well. HAS (our advocates) have really helped us communicate with the facility. After our queries, they suddenly interpreted the doctor's notes as needing supervision while she is off the vent. They confessed that they were too short staffed to follow through with the weaning if they had to supervise her the whole duration, which is why she was only getting 15 minutes at a time. Obviously this is completely unjust and negligent.
We offered to help the staff by being present while Mom was off the vent. Somehow, over the weekend, that got interpreted by the staff as "no weaning unless family is present." Therefore, Mom was not weaned at all for a few days. Of course, Dad and I were not contacted about this, nor was any effort made to set up a schedule with us. Actually, on Sunday she was barely visited by an RT at all.
While we were there on Sunday discussing the situation, the RT told us that a few weeks ago Mom was consistently off the vent for 4 - 6 hours at a time! This was the first we had heard this great news and fueled my anger about the lack of communication at this facility. They cut back on the weaning during her bout with nausea a few weeks ago and seemed to never get back on track. The RT couldn't tell me what changed and I had to tell him about the nausea (which fueled my anger about the communication WITHIN the facility). He thought that if he had the support and collaboration with PT and OT, he could get Mom off the vent in 10 days. I recognize that that's mostly his ego/swagger talking, but it definitely shows how strong Mom is and how soon she could be breathing on her own.
Today, they have completely changed their tune and are incredibly friendly, helpful, and apologetic to us and our advocate, Jason. Obviously there was some sort of internal meeting where Mom's case was discussed. The supervisor of the RT team is back from vacation and picking up the pieces of the damage her team has caused with their honestly. They are promising to deliver on all the things we've been asking for for months (care plan, weekly calls/updates of milestones, etc).
We definitely have enough ammo to petition insurance to have Mom moved back to Vibra immediately. We will certainly be filing formal complaints with the state of WA about Pac Spec. Right now, we just want them to do their job and get Mom stronger.
Mom is doing very well and making tremendous progress in her weaning. She was off the vent for 2 hours yesterday without any problems or stress. Today she did at least two, but I haven't gotten an update to confirm exactly how long. Her oxygen levels and CO2 levels were perfect and they even did speech therapy with the voice valve while she was breathing on her own.
PT is also going well, but I don't have many details. I know she's been up in her chair everyday for and hour or two at a time.
We've been trying to figure out why Pac Spec hasn't been aggressive with her weaning over the past few weeks, since Mom seems so strong and well. HAS (our advocates) have really helped us communicate with the facility. After our queries, they suddenly interpreted the doctor's notes as needing supervision while she is off the vent. They confessed that they were too short staffed to follow through with the weaning if they had to supervise her the whole duration, which is why she was only getting 15 minutes at a time. Obviously this is completely unjust and negligent.
We offered to help the staff by being present while Mom was off the vent. Somehow, over the weekend, that got interpreted by the staff as "no weaning unless family is present." Therefore, Mom was not weaned at all for a few days. Of course, Dad and I were not contacted about this, nor was any effort made to set up a schedule with us. Actually, on Sunday she was barely visited by an RT at all.
While we were there on Sunday discussing the situation, the RT told us that a few weeks ago Mom was consistently off the vent for 4 - 6 hours at a time! This was the first we had heard this great news and fueled my anger about the lack of communication at this facility. They cut back on the weaning during her bout with nausea a few weeks ago and seemed to never get back on track. The RT couldn't tell me what changed and I had to tell him about the nausea (which fueled my anger about the communication WITHIN the facility). He thought that if he had the support and collaboration with PT and OT, he could get Mom off the vent in 10 days. I recognize that that's mostly his ego/swagger talking, but it definitely shows how strong Mom is and how soon she could be breathing on her own.
Today, they have completely changed their tune and are incredibly friendly, helpful, and apologetic to us and our advocate, Jason. Obviously there was some sort of internal meeting where Mom's case was discussed. The supervisor of the RT team is back from vacation and picking up the pieces of the damage her team has caused with their honestly. They are promising to deliver on all the things we've been asking for for months (care plan, weekly calls/updates of milestones, etc).
We definitely have enough ammo to petition insurance to have Mom moved back to Vibra immediately. We will certainly be filing formal complaints with the state of WA about Pac Spec. Right now, we just want them to do their job and get Mom stronger.
Tuesday, July 26, 2011
Mom had a slow week last week. She had some nausea during the first part of the week. Then we learned she wasn't getting PT, OT or ST because of "insurance criteria." It was very frustrating, just trying to figure out what was going on and why she wasn't getting her therapies. As you know, we need to keep Mom moving and as active as possible so she can regain her strength. The facility is suppose to call me consistently with updates/progress/news and they still aren't following through.
They are back on track with her therapies this week, thankfully.
She's still getting weaned from the vent. Mom, Dad and I think they could be more aggressive with it than they are and we're trying to figure out a way to make that happen. She's suppose to be working up to 6 hours off the vent, but they seem to just be doing the minimum (15 minutes) each time. They are suppose to be getting her off the vent twice/day and they seem to be doing it only once/day, if that.
Sorry to use this blog as a platform for my frustration, but it's hard to get past it today. The Healthcare Advocates are we hired are helping me with these issues, too.
Please know that Mom is in good spirits for the most part. Her strength and good nature is a blessing. She can't wait to get outta there and get home though. I can't tell you how much she appreciates your cards/letters. Thank you! Please keep them coming.
They are back on track with her therapies this week, thankfully.
She's still getting weaned from the vent. Mom, Dad and I think they could be more aggressive with it than they are and we're trying to figure out a way to make that happen. She's suppose to be working up to 6 hours off the vent, but they seem to just be doing the minimum (15 minutes) each time. They are suppose to be getting her off the vent twice/day and they seem to be doing it only once/day, if that.
Sorry to use this blog as a platform for my frustration, but it's hard to get past it today. The Healthcare Advocates are we hired are helping me with these issues, too.
Please know that Mom is in good spirits for the most part. Her strength and good nature is a blessing. She can't wait to get outta there and get home though. I can't tell you how much she appreciates your cards/letters. Thank you! Please keep them coming.
Thursday, July 14, 2011
all good still
I don't have much new to add, but wanted you to know that Mom continues to do well. They are continuing to increase her time off the vent, although I don't know exactly what she's up to now. She's spending more time out of the bed, sitting up or in the wheelchair, some days up to 3 hours. Her PT tennis shoes are getting good use as she builds up strength.
Dad has been in Bend this week catching up on some doctor appointments with his brother, Dewey. It's great to be able to spend time with Dewey. He'll be with us in Portland over this weekend, too.
Dad has been in Bend this week catching up on some doctor appointments with his brother, Dewey. It's great to be able to spend time with Dewey. He'll be with us in Portland over this weekend, too.
Wednesday, July 6, 2011
More Weaning
Mom spent over an hour off the vent breathing on her own. It was the longest stretch so far. Great progress.
She was fitted for a Passy-Muir valve for speech. They put it in Monday when Dad and I were visiting, but it just made her cough a lot. Dad was there yesterday when they tried it again. Her voice was somewhat distorted and strained, but he said it was wonderful to hear her voice again!
She doesn't have it in all the time. We're looking forward to learning what the schedule is for using the valve, how frequently and for what duration and all those details. It sounds like they'll continue to gradually increase it's usage as she grows stronger.
PT is also going well. They have been practicing going from sitting on the edge of the bed to standing up. She still needs to build up her strength in her legs, and this is a great way to do it.
She was fitted for a Passy-Muir valve for speech. They put it in Monday when Dad and I were visiting, but it just made her cough a lot. Dad was there yesterday when they tried it again. Her voice was somewhat distorted and strained, but he said it was wonderful to hear her voice again!
She doesn't have it in all the time. We're looking forward to learning what the schedule is for using the valve, how frequently and for what duration and all those details. It sounds like they'll continue to gradually increase it's usage as she grows stronger.
PT is also going well. They have been practicing going from sitting on the edge of the bed to standing up. She still needs to build up her strength in her legs, and this is a great way to do it.
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