Mom has been off the vent 24 hours a day since about Friday! She's doing great.
They reduced the size of her trach, too. If all goes well with that they will cap the trach tomorrow. This blocks off the airway and makes her breath around it.
On Thursday, the doc will assess her progress and determine when they can remove the trach completely.
Also, they are trying out solid foods. She successfully ate three teaspoons of chocolate pudding.
She is still making steady progress with PT and OT: practices log rolls to sit up in bed, puts a lot of effort into moving from the bed to the chair and even takes a few steps on her own in the process. She will be getting herself dressed daily and they will work in other "everyday" habits to get her back to doing normal things.
Tuesday, August 30, 2011
Monday, August 22, 2011
Mom had a mellow weekend. We visited with the kids on Saturday and Mom was going on her 6th hour off the vent. Usually my visits with the kids are pretty short because the kids are too rambunctious. This time we were able to stay for quite a while and Mom wasn't fatigued at all (well, much). The kids were crawling all over her bed, too. I was very impressed.
I haven't heard how long she was off the vent on Saturday night. Sunday morning, she went for another 6 hours or so.
I haven't heard how long she was off the vent on Saturday night. Sunday morning, she went for another 6 hours or so.
Thursday, August 18, 2011
Care Meeting
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).
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).
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.
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