Care meeting
Hi Friends,
Well, the care meeting was today, and I met with Dinh afterward so he could debrief me on what they discussed. Mom's tentative discharge date is Nov. 9, which is I think exactly 5 wks from today. This of course may change based on her medical status or progress, but otherwise that is the day. As for what they expect based on the progress she's already made, Dinh said that cognitively, by discharge, she will most likely be functioning at around 50% of where she was prior to the accident. Sounds pretty grim, but I'm trying to remember that at that time, she will still have much more therapy ahead of her. That will only be 10 wks to the day from her accident, which is nothing...from everything I've read so far, it takes at LEAST a year before most brain injured people are close to where they were prior to the accident. Physically, they expect her to be fairly independent except for more complex things like stairs, which she will most likely need minimal assistance with. For her activities of daily living (bathing, dressing, etc.) they say she will most likely be independent with supervision needed (for example, she may not be cognitively able to pick appropriate clothing for time of day, weather, etc. without guidance). She will not be able to operate any kind of machinery or appliances without supervision (i.e. microwave, stove, etc.). She will most likely be eating by mouth, but may still be on a pureed diet depending on how her swallowing is working (mmm, sounds appetizing, eh?). They are going to talk with her neurosurgeon to see what his plan is in terms of doing the surgery to replace her section of skull bone...this will determine whether they will take the trach out or whether they will just leave it in until after her surgery. The benefit of leaving it is that she will not have to be intubated for the surgery...but if the surgery is still months away, they will probably take it out once they determine it is absolutely safe.
That brings me to another fear...there are potential risks involved with putting the skull back on, which I hadn't known about or considered. It is VERY rare, but occasionally there is further damage done to the brain during the surgery...if they cause another bleed, if she gets an infection postop, etc. Ugh, there is always something new to worry about.
They took the urinary catheter out a day or two ago, and since then she has been retaining urine (i.e. not able to void on her own). It may take awhile to retrain those muscles, and there are also medications to help with this. They also started mom on Lexapro today, an anti-depressant/mood stabilizer...they had noticed her sadness and mood instability, and don't want this to hinder her progress in therapies. This is also a very common thing with brain injuries as the person becomes more aware of their situation and that something is wrong. So hopefully this will improve her mood in the next few days.
Another thing I am struggling with is what to do once she is discharged home...they are quite sure she will need 24 hr supervision, and I have no idea what I'm going to do. Quite honestly, I don't know how much, if any, insurance will cover in terms of having someone be with her while I am at work. She will definitely need to go to outpatient day rehab, which takes care of some of the day, but generally that is from about 9am to 3:30pm...the problem is that my work shifts start at 7:30am, and even if I only do 8 hr shifts, they don't end until 4pm. This leaves time on either end when I have to figure out who can be with her. What am I going to do??? No matter what people say as far as me not having to figure this out quite yet, 6 wks goes very quickly, and when I have NO CLUE what I'm going to do, that seems to be all I can think and worry about.
Sometimes, this all seems like too much to handle. I'm just barely scraping by, and I feel like any moment I'm going to completely lose it. I don't feel strong enough...I often just want to crawl into a hole and never come out these days. In fact, that's how I feel a majority of the time. I can't do this by myself...I just can't, now matter how many people tell me I'm "such a strong person." I'm beginning to doubt that I'm strong enough for this. And I know people say I'm not doing this alone...but ultimately I am, because ultimately it is on my shoulders, and I have to be the one to make the decisions and deal with it. I don't feel grown up enough to be doing this. I'm so scared, and I want my mom.
Well, the care meeting was today, and I met with Dinh afterward so he could debrief me on what they discussed. Mom's tentative discharge date is Nov. 9, which is I think exactly 5 wks from today. This of course may change based on her medical status or progress, but otherwise that is the day. As for what they expect based on the progress she's already made, Dinh said that cognitively, by discharge, she will most likely be functioning at around 50% of where she was prior to the accident. Sounds pretty grim, but I'm trying to remember that at that time, she will still have much more therapy ahead of her. That will only be 10 wks to the day from her accident, which is nothing...from everything I've read so far, it takes at LEAST a year before most brain injured people are close to where they were prior to the accident. Physically, they expect her to be fairly independent except for more complex things like stairs, which she will most likely need minimal assistance with. For her activities of daily living (bathing, dressing, etc.) they say she will most likely be independent with supervision needed (for example, she may not be cognitively able to pick appropriate clothing for time of day, weather, etc. without guidance). She will not be able to operate any kind of machinery or appliances without supervision (i.e. microwave, stove, etc.). She will most likely be eating by mouth, but may still be on a pureed diet depending on how her swallowing is working (mmm, sounds appetizing, eh?). They are going to talk with her neurosurgeon to see what his plan is in terms of doing the surgery to replace her section of skull bone...this will determine whether they will take the trach out or whether they will just leave it in until after her surgery. The benefit of leaving it is that she will not have to be intubated for the surgery...but if the surgery is still months away, they will probably take it out once they determine it is absolutely safe.
That brings me to another fear...there are potential risks involved with putting the skull back on, which I hadn't known about or considered. It is VERY rare, but occasionally there is further damage done to the brain during the surgery...if they cause another bleed, if she gets an infection postop, etc. Ugh, there is always something new to worry about.
They took the urinary catheter out a day or two ago, and since then she has been retaining urine (i.e. not able to void on her own). It may take awhile to retrain those muscles, and there are also medications to help with this. They also started mom on Lexapro today, an anti-depressant/mood stabilizer...they had noticed her sadness and mood instability, and don't want this to hinder her progress in therapies. This is also a very common thing with brain injuries as the person becomes more aware of their situation and that something is wrong. So hopefully this will improve her mood in the next few days.
Another thing I am struggling with is what to do once she is discharged home...they are quite sure she will need 24 hr supervision, and I have no idea what I'm going to do. Quite honestly, I don't know how much, if any, insurance will cover in terms of having someone be with her while I am at work. She will definitely need to go to outpatient day rehab, which takes care of some of the day, but generally that is from about 9am to 3:30pm...the problem is that my work shifts start at 7:30am, and even if I only do 8 hr shifts, they don't end until 4pm. This leaves time on either end when I have to figure out who can be with her. What am I going to do??? No matter what people say as far as me not having to figure this out quite yet, 6 wks goes very quickly, and when I have NO CLUE what I'm going to do, that seems to be all I can think and worry about.
Sometimes, this all seems like too much to handle. I'm just barely scraping by, and I feel like any moment I'm going to completely lose it. I don't feel strong enough...I often just want to crawl into a hole and never come out these days. In fact, that's how I feel a majority of the time. I can't do this by myself...I just can't, now matter how many people tell me I'm "such a strong person." I'm beginning to doubt that I'm strong enough for this. And I know people say I'm not doing this alone...but ultimately I am, because ultimately it is on my shoulders, and I have to be the one to make the decisions and deal with it. I don't feel grown up enough to be doing this. I'm so scared, and I want my mom.
Comments
It's OK to crawl in that hole for a short time. Just don't stay! You need time to yourself, to be yourself, to feel sorry for yourself. It's certainly acceptable and necessary. An individual's resolve and strength is tested throughout life-altering situations. Heck, they're tested throughout life, plain and simple! Each day may require a different tactic to get through. One day it may be something that requires a couple hours, another only 10 minutes. Do it and don't feel guilty! You are worthy!! Love and prayers to both of you! Tracy
How could you possibly feel otherwise? Tracy is right, you are entitled to those feelings. I've told you on the phone how amazing you are and YOU ARE! You are absolutely the light of your Mom's life and you are prooving why in a way that nobody could have foreseen. Easy for me to say, but don't waiver! Of course you want her. We all do! I have seen her smile and the light in her eyes when she speaks of you, so keep the faith Amanda, and we will see that sparkle in Bev's eyes again soon! Peace and Love!
This latest entry made me so sad. You are such an amazing person and what you are feeling right now is totally normal. We all know you and Bev will get through this together with the help of your family and friends. Just know you can always count on us. Don't ever forget that!
Love, Jillian