Good News.....Today I arrived at the hospital about 9'ish....to find my mom wide awake with the tube still in. She had been trying to talk with Shirley and I saw that she had been trying to write - really?? - she hasn't been able to write since all of this happened on March 16th. Wow - really...she looked better then she had since before this all happened.
About 1pm she got the tube out - that went well - she was supposed to not use her voice very much for the rest of the day. She was so excited to get ice chips and she watch the time when she would be able to have water. I have to say that it was so good to see her "want" water as we had been force-feeding her the water for days. The physical therapist came by today and my mom sat at the side of the bed and stood up. All in all she is headed in a good direction after yesterday's scare. She is being tube fed and hydrated and leaning to breath with a special machine called C-pap that she will have to use at night.
After to seeing my mom yesterday in the emergency room and hearing all the doctor had to say I think it is safe to say that my mom has survived one more brush with death. Some things have come to back to me that had occurred this last week.
My mom had been at Eskaton a week and a day when this happened....I had been asking the staff, including the Kaiser doctor, about her breathing and swollen feet. Each day I visited I noticed that she hadn't eaten anything and barely drank anything....I asked about how long they go before they help with food intake and fluid intake,,,the answer was "that patients have the right to refuse"......I didn't understand that a doctor wasn't made aware of this...since she really hadn't eaten since March 15th. Also, no one encouraged her to use her spirometer (the breathing thing) - I was starting to really dislike this place and feel uneasy about my mom's well being. She was also so tired and so weak...she would fall fast asleep and be really hard to wake, she would sleep sitting up all these things were red flags - wasn't this staff trained to see that?? Then on Tuesday my mom asked me where my dad was...I said "my dad - where is my dad?" and she said "well I know he is dead but he is hanging around here" I asked her if he says anything to her and she said no that he is "just here". What was she saying?? I think my dad was there....I think he was keeping her here...it is not her time.
What I am learning everyday is...we all need to be a vital part of our care and the care of our loved ones...I feel for the patients who don't get visitors or don't have people that hang around and question. I think that we are taught to respect doctors and nurses as people who know what they are doing - BUT they don't KNOW us or our loved ones as much as we know...and we should be heard. So if there is any message in all of this it is to BE HEARD and if you aren't being heard talk louder.
Right now we are back to no visitors...but when she is moved I will let you all know and visits will be very welcome again. I am now on the hunt for the next care home for her so she can continue her rehab...she still needs physical and occupational therapies...but from what I saw today if she can continue gaining strength then, hopefully this next time will go better. Thanks for all the positive thoughts and prayers. Sleep well
Friday, April 6, 2012
Day 22 am
Just called to check on my mom and her nurse Brenda said that she was stable and has been awake since 4 am wanting the tube out. Brenda told her that the doctor has to come to evaluate whether or not she can get it out and Dr. Kwan (awesome lady) is coming about 8:30 - so it could be today that they take that tube out.....we shall see. I remember from last time that the "peep" setting had to be at 5 or less - that measures how much the machine is working vs. my mom initiating breathing - and she was at 5 when I left so maybe they will get it out. This time I know they will monitor her blood gases more after she is off the tube as compared to last time...they only measured her blood gases on the day the tube was removed and not again. So this time I hope they check it again before they send her on her merry way......I will ask for it if they don't...in retrospect I think it should have been tested before she left Kaiser as that is when I noticed she was breathing differently....the things you learn. More later
Thursday, April 5, 2012
Day 21
Well........today was a hard day. Today about 12:30 I received a call from Eskaton letting me know that they had to call the ambulance to transport my mom to Kaiser as she was unresponsive - I was in a weird shock - what did she just say??? I was at home without a sitter and so I called my brother and he went to the ER. I arrived shortly there after with Michael in tow to find Sonia and Christian. Once they had her settled I was allowed in. She was not conscious and had the breathing tube in again. I just stood there...shit the tube - she hates that tube. I waited and the doctor came in to tell me that she came in to the ER in respiratory distress and she had not been conscious at all and now they had medicated her to keep her from pulling the tube. CAT scans were done to make sure she hadn't suffered a stroke or a blood clot - the tests showed NO stroke of clots - good - so what the hell is going on?? She is currently in the ICU at Kaiser south.
I called Eskaton back to ask about the day's events...what had led up to this? Since she had fallen I called and asked Sonia if she could go by and check on her this morning...she called me about 7am to tell me that mom was tired but had woken up to see her and Sonia left some bread pudding and oj for her. Eskaton told me that she had eaten some of the pudding , oj and cereal for breakfast and had walked with therapy and had been sitting in the wheelchair...but at lunch they couldn't wake her and they called the doctor and the doctor ordered that they call 911.
Turns out that this shortness of breath and loss of her voice was related to too much carbon dioxide in her blood - so basically she was breathing in...but unable to get rid of the air again so she was struggling so much to breath that she was just too weak to continue to breathe. I feel annoyed since I had ask Eskaton why they didn't check blood gases (an easy blood test that would have told them that this was going on). Frustrating. They said that they don't do those types of tests. The other thing I don't get is why, when she had been so short of breath, was the doctor not notified??? Aren't these people trained to look for sign of distress??? She was clearly having a hard time. Anyways......
So we are now in a wait and see. The doctor said that it was too soon to say how long she may be there. The good news is that she will be getting nutrition and fluids - her blood work also showed a lack of nutrition (starving).....and also that she will be monitored closely for her vitals....I am asking for positive thoughts and prayers. We are back to no visitors for awhile...but I will keep blogging to keep you all informed. Thank you.
I called Eskaton back to ask about the day's events...what had led up to this? Since she had fallen I called and asked Sonia if she could go by and check on her this morning...she called me about 7am to tell me that mom was tired but had woken up to see her and Sonia left some bread pudding and oj for her. Eskaton told me that she had eaten some of the pudding , oj and cereal for breakfast and had walked with therapy and had been sitting in the wheelchair...but at lunch they couldn't wake her and they called the doctor and the doctor ordered that they call 911.
Turns out that this shortness of breath and loss of her voice was related to too much carbon dioxide in her blood - so basically she was breathing in...but unable to get rid of the air again so she was struggling so much to breath that she was just too weak to continue to breathe. I feel annoyed since I had ask Eskaton why they didn't check blood gases (an easy blood test that would have told them that this was going on). Frustrating. They said that they don't do those types of tests. The other thing I don't get is why, when she had been so short of breath, was the doctor not notified??? Aren't these people trained to look for sign of distress??? She was clearly having a hard time. Anyways......
So we are now in a wait and see. The doctor said that it was too soon to say how long she may be there. The good news is that she will be getting nutrition and fluids - her blood work also showed a lack of nutrition (starving).....and also that she will be monitored closely for her vitals....I am asking for positive thoughts and prayers. We are back to no visitors for awhile...but I will keep blogging to keep you all informed. Thank you.
Wednesday, April 4, 2012
Day 20
Wednesday....today marks one week at Eskaton....yesterday I called and voiced my concerns to the floor manager and today I felt the coldness of the staff that it effected....the nurse had even told my mom that I was stressing him....so my mom told me to stop calling and to quit worrying....well mom not going to happen. I did tell the nurse that my conversation with the manager was nothing personal that this is my mother and I wanted the best care for her and he would do the same if it were his mother, I have since been told by 2 health professionals that I did the right thing and that these patients need advocates...but I am very sorry that he told my mom.
As for my mom I would have to say that this was a bit of a down day...she was very tired and barely ate anything. I know tonight that Deborah stopped by and sort of forced my mom to eat some soup even though she wasn't thrilled about it. My mom is also very swollen especially her right foot...I am interested in finding out why it keeps happening....also the fact that she can not finish a short sentence without running out of air. I am hoping that she doesn't end up being oxygen dependent. Deborah asked me if I was giving her a multi-vitamin and I said I thought that Eskaton was as I heard the nurse tell her that she was getting pills and a vitamin...but the computer said no and that I was not allowed to bring vitamins from the outside to give her but that they would talk to the (invisible) doctor about it. I think it is interesting that they haven't already done this being that she doesn't eat. OK we can all live without eating for quite awhile but water we can not live without....SHE HAS TO DRINK MORE WATER.
So for all her friends who visit I have a favor....there is a spirometer in her room (it is a clear thing with a blue hose and mouth piece) she is supposed to inhale with it 5x every hour - deep inhalations, or have her do at least 5 deep breathes with in through your nose out through your mouth AND drink water while you are there - that would be awesome...I can not be there 24 hours a day so your help would be so appreciated....I really don't think that she thinks about it when no one brings it up....she will probably tell you that she will do it tomorrow, she just isn't quite herself yet.
At 9pm my phone rang and I noticed the number as Eskaton's - uh-oh I thought...it was the nurse who called to tell me that my mom had "slid out of bed" - fell out of bed. She had been assessed and there were no injuries - I know that she is on heporin (a blood thinner) so I asked if that posed a problem and he said that she has no injuries - I called to talk to her and ask her if she was breakdancing - she laughed and said that she is fine...so I said good night.
Take care all and thank you again for your visits, calls, emails, cards and thoughts...they really mean a lot to all of us. If you don't already have it here is my email mandersen06@sbcglobal.net
Good night
As for my mom I would have to say that this was a bit of a down day...she was very tired and barely ate anything. I know tonight that Deborah stopped by and sort of forced my mom to eat some soup even though she wasn't thrilled about it. My mom is also very swollen especially her right foot...I am interested in finding out why it keeps happening....also the fact that she can not finish a short sentence without running out of air. I am hoping that she doesn't end up being oxygen dependent. Deborah asked me if I was giving her a multi-vitamin and I said I thought that Eskaton was as I heard the nurse tell her that she was getting pills and a vitamin...but the computer said no and that I was not allowed to bring vitamins from the outside to give her but that they would talk to the (invisible) doctor about it. I think it is interesting that they haven't already done this being that she doesn't eat. OK we can all live without eating for quite awhile but water we can not live without....SHE HAS TO DRINK MORE WATER.
So for all her friends who visit I have a favor....there is a spirometer in her room (it is a clear thing with a blue hose and mouth piece) she is supposed to inhale with it 5x every hour - deep inhalations, or have her do at least 5 deep breathes with in through your nose out through your mouth AND drink water while you are there - that would be awesome...I can not be there 24 hours a day so your help would be so appreciated....I really don't think that she thinks about it when no one brings it up....she will probably tell you that she will do it tomorrow, she just isn't quite herself yet.
At 9pm my phone rang and I noticed the number as Eskaton's - uh-oh I thought...it was the nurse who called to tell me that my mom had "slid out of bed" - fell out of bed. She had been assessed and there were no injuries - I know that she is on heporin (a blood thinner) so I asked if that posed a problem and he said that she has no injuries - I called to talk to her and ask her if she was breakdancing - she laughed and said that she is fine...so I said good night.
Take care all and thank you again for your visits, calls, emails, cards and thoughts...they really mean a lot to all of us. If you don't already have it here is my email mandersen06@sbcglobal.net
Good night
Tuesday, April 3, 2012
Day 19
Tuesday....today I arrived to find my mom sleeping very well. She had not slept very much last night so she was quite tired...not even stirring when I entered the room and put stuff down and watered flowers and talked to her roommate..so I decided to let her sleep and headed to her house to get some more clothes at her request. Shirley offered to take the clothes back to my mom and so I headed home to relieve my babysitter.
Shirley told me that my mom had her session in therapy and sat in a chair or wheelchair for 2'ish hours even enjoying some sunshine in the courtyard. When Shirley left my mom was good and tired and ready for a nap. My kids and I arrived about an hour later to find my mom sleeping again...this time I woke her and she was happy to see the kids and them her. Babies draw a lot of attention in a place like Eskaton...the residents love smiling and waving at Malena and Mia entertained with her light up shoes. Michael sat with his Oowa and talked with her...very sweet to see (he has been having a hard time with all of this-so it was good to see them just sitting together).
Everyday is a new day and I have come to realize that she is totally moving in the right direction - 2 steps forward 1 step back....is all good. Her appetite has improved and she is eating more of what they serve - great. I think she is surprised how tired she is but she is only 2.5 weeks from her surgery. More than one person has told me that by 6 weeks she will feel better from the surgery and be ready to "really" work. I am proud of my mom for getting to this point....she is not always happy about what she is being asked to do but she does it (most of the time).
Today I did call and talk with the manager about the things I have observed (Deborah really encouraged me to tell them)...I am not good with this kind of thing...I tend to want everyone to be happy - peace on earth - but it did feel good to tell Lauren (the floor manager). I think about all the residents...my mom has a lot of people looking out for her - not afraid to ask questions and question certain things that are being done...I don't see a lot of others with vistors. I really think that the staff is so nice and trying to do the right thing but I can not help it when I feel uneasy about something. It is interesting in these types of places because the patients have the "right to refuse" anything from treatment to food - so there is a fine line between suggestion and control. Today I found my mom's oxygen tube wrapped around her neck 2x....ummmm??? so I fixed it and told them about it and they were concerned...also the nurse this afternoon spilled the breathing treatment meds and didn't even realize it until I showed him it all over the floor. I feel embarrassed to show my face now since I complained but Christian told me that when he was there this evening they were all over making sure that everything was just right....so maybe it is right....the sqeaky wheel does get the oil.
Sleep well mom. Thank you to all of you for your cards, thoughts, flowers and visits they mean a lot. She has a journey ahead but she will get there with all our encouragement and well wishes....thanks again.
Shirley told me that my mom had her session in therapy and sat in a chair or wheelchair for 2'ish hours even enjoying some sunshine in the courtyard. When Shirley left my mom was good and tired and ready for a nap. My kids and I arrived about an hour later to find my mom sleeping again...this time I woke her and she was happy to see the kids and them her. Babies draw a lot of attention in a place like Eskaton...the residents love smiling and waving at Malena and Mia entertained with her light up shoes. Michael sat with his Oowa and talked with her...very sweet to see (he has been having a hard time with all of this-so it was good to see them just sitting together).
Everyday is a new day and I have come to realize that she is totally moving in the right direction - 2 steps forward 1 step back....is all good. Her appetite has improved and she is eating more of what they serve - great. I think she is surprised how tired she is but she is only 2.5 weeks from her surgery. More than one person has told me that by 6 weeks she will feel better from the surgery and be ready to "really" work. I am proud of my mom for getting to this point....she is not always happy about what she is being asked to do but she does it (most of the time).
Today I did call and talk with the manager about the things I have observed (Deborah really encouraged me to tell them)...I am not good with this kind of thing...I tend to want everyone to be happy - peace on earth - but it did feel good to tell Lauren (the floor manager). I think about all the residents...my mom has a lot of people looking out for her - not afraid to ask questions and question certain things that are being done...I don't see a lot of others with vistors. I really think that the staff is so nice and trying to do the right thing but I can not help it when I feel uneasy about something. It is interesting in these types of places because the patients have the "right to refuse" anything from treatment to food - so there is a fine line between suggestion and control. Today I found my mom's oxygen tube wrapped around her neck 2x....ummmm??? so I fixed it and told them about it and they were concerned...also the nurse this afternoon spilled the breathing treatment meds and didn't even realize it until I showed him it all over the floor. I feel embarrassed to show my face now since I complained but Christian told me that when he was there this evening they were all over making sure that everything was just right....so maybe it is right....the sqeaky wheel does get the oil.
Sleep well mom. Thank you to all of you for your cards, thoughts, flowers and visits they mean a lot. She has a journey ahead but she will get there with all our encouragement and well wishes....thanks again.
Monday, April 2, 2012
Day 18
Monday.....arrived to mom snoozing - let her sleep a little then I woke her with a Starbucks carmel machiato..she was excited. She seemed clearer today than yesterday, very refreshing as I was feeling a bit discouraged yesterday. She did look at the clock and say "I don't want to go at 10" I asked where and she said "therapy"...I reminded her that this was her ticket to get out of here. She reminded me that she gets therapy 2x a day and it is a lot of work. Before long in walked the therapist and my mom was not happy but got up anyways.
Today I did not hear her say "am I done", "can I be done" very often - I reminded her that she sounded like her grandson complaining so she stopped (after rolling her eyes at me). The therapist was good about pushing her a bit past her comfort zone. She lasted longer today....25 minutes versus 10 yesterday. Also this therapist tested her ability to be without the oxygen. My mom has been on quite a bit of oxygen and she will have to wean herself before she can go home....this therapist turn it off and challenged my mom to keep her O2 number above 91...once she got the hang of it she did get it up there. Then she had her walk...wow my mom walked the equivalent of about 1/2 a block with a walker. Way to go mom. The therapist was happy too. We wheeled her back to her room and she rang for the CNA to help her climb back in bed. I thought it was fair for her to have a nap and then she would be up again for lunch and afternoon therapy and then up again for dinner. Talked to Sonia and she said that mom ate a little at dinner. My mom told me that most of the food turns her stomach just by sight. I can appreciate that it doesn't look too appetizing. I think we have to find the stuff she will eat besides yoghurt...she did tell Sonia that danish cheese sounded good.
I talked with Deborah tonight, she is the clinical nurse specialist for geriatrics at Kaiser and a good friend. She asked how things were going at the nursing home - so I told her about what I had observed and been told from Sonia - how my mom can ring her buzzer and no one comes or they stop by and then go away with out helping her. She asked me if I had talked to the dietician about my moms lack of food consumption....she said that it is wrong that she is not on a liquid protein drink by now, that her call button isn't always within reach, that the staff mistakes my mom for past patients. We talked about how this is a "good" nursing home how must the others be? Again it is like the job of childcare workers...pay very little for the love and care of someone else's most precious cargo - it is almost a crime how little CNA's and childcare workers get paid...and benefits -hahahahahahahahahaha She told me that I should talk with the manager or the ombudsmen. I told her that I would be worried about talking negatively because I would be afraid that they would take it out on my mom. But it is sad. Another thing I thought was interesting when I was checking their website - they do not take long-term insurance.....my insurance guy made it sound like you could go anywhere as long as you had long-term insurance and this place doesn't take it....then where do you go????? Just think if the supreme court decides not to support the healthcare plan...then millions more will be uninsured then what will happen to our nursing homes....?? With no money to help people pay for nursing care...where will they live? Scary. I know that I want the best for my family and believe that we all deserve to be taken care of in a dignified maner.
Today I did not hear her say "am I done", "can I be done" very often - I reminded her that she sounded like her grandson complaining so she stopped (after rolling her eyes at me). The therapist was good about pushing her a bit past her comfort zone. She lasted longer today....25 minutes versus 10 yesterday. Also this therapist tested her ability to be without the oxygen. My mom has been on quite a bit of oxygen and she will have to wean herself before she can go home....this therapist turn it off and challenged my mom to keep her O2 number above 91...once she got the hang of it she did get it up there. Then she had her walk...wow my mom walked the equivalent of about 1/2 a block with a walker. Way to go mom. The therapist was happy too. We wheeled her back to her room and she rang for the CNA to help her climb back in bed. I thought it was fair for her to have a nap and then she would be up again for lunch and afternoon therapy and then up again for dinner. Talked to Sonia and she said that mom ate a little at dinner. My mom told me that most of the food turns her stomach just by sight. I can appreciate that it doesn't look too appetizing. I think we have to find the stuff she will eat besides yoghurt...she did tell Sonia that danish cheese sounded good.
I talked with Deborah tonight, she is the clinical nurse specialist for geriatrics at Kaiser and a good friend. She asked how things were going at the nursing home - so I told her about what I had observed and been told from Sonia - how my mom can ring her buzzer and no one comes or they stop by and then go away with out helping her. She asked me if I had talked to the dietician about my moms lack of food consumption....she said that it is wrong that she is not on a liquid protein drink by now, that her call button isn't always within reach, that the staff mistakes my mom for past patients. We talked about how this is a "good" nursing home how must the others be? Again it is like the job of childcare workers...pay very little for the love and care of someone else's most precious cargo - it is almost a crime how little CNA's and childcare workers get paid...and benefits -hahahahahahahahahaha She told me that I should talk with the manager or the ombudsmen. I told her that I would be worried about talking negatively because I would be afraid that they would take it out on my mom. But it is sad. Another thing I thought was interesting when I was checking their website - they do not take long-term insurance.....my insurance guy made it sound like you could go anywhere as long as you had long-term insurance and this place doesn't take it....then where do you go????? Just think if the supreme court decides not to support the healthcare plan...then millions more will be uninsured then what will happen to our nursing homes....?? With no money to help people pay for nursing care...where will they live? Scary. I know that I want the best for my family and believe that we all deserve to be taken care of in a dignified maner.
Sunday, April 1, 2012
Day 17
I arrived about 10:30 am to find my mom lying in bed and the blinds still drawn BUT she had "real" clothes on. Also, 2 friends (Sheryl and Cathy) were there with a beautiful bouquet of roses. I came with yoghurt, vitamins, vitamin water, dry shampoo and good lotion. I needed my mom in a chair to do this shampoo so I asked for help getting her into the wheelchair. So I rang the call button and waited and waited - I thought if she had to go to the bathroom she would have wet her pants...it takes them a long time to come in - urgggg - finally I went out there and asked for help. I have no frame of reference as to what this staff should be doing...maybe this is normal that one would have to wait and wait. Each step has been a learning process for me...leaving ICU (where her needs were met practically before she needed it) to 4th floor (the needs were met a little slower) to here.....is this normal and the way it is with our elderly and sick???
So I got her hair shampoo with this weird mousse type stuff that you just put in and leave for a few minutes and then comb it out - it looked good if i do say so myself. I helped her wash her face and gave her some good lotion - my mom has very sensitive skin so everything makes her break out. Hopefully the stuff we used today didn't do that to her. My cousin Elizabeth and her family arrived about then and so we took my mom for a ride around and got her outside in the nice sunshine.
We said goodbye to Elizabeth and went back to the room to meet Shirley and the physical therapist and my mom was off to therapy.
I am noticing that she is really short of breath, a reason for all the extreme tiredness, she talks about it a lot too. I tried to make her see that when she sits up she breathes better..hopefully she will remember that. My mom seems oddly confused to me....sometimes very clear but other times a tad off....is this the "sundowner" syndrome I have heard about??? How can I help her with clarity?? Is this the thing the surgeon talked about that would last a few weeks?? Does she have something else going on?? I am going to be there early tomorrow so that I can get ahold of the doctor to find all this out.
I am trying to balance me with all of this....I feel bad when I am not there and guilty when I am not thinking about my mom for a minute. I know my mom has the potential for beating all of this and getting better and getting home now she just needs to know it. I think my mom is a little down and feeling like it is impossible to get back to the way she was....it is going to be a hell of a lot of work but she has to fight. I keep thinking that if only this pneumonia would go away that would increase her appetite and her energy and hopefully her oxygen......we shall see.
Visiting is good....she needs the distraction - it will make the day go by faster and make it so she doesn't sleep all day. I appreciate it. Thanks again.
So I got her hair shampoo with this weird mousse type stuff that you just put in and leave for a few minutes and then comb it out - it looked good if i do say so myself. I helped her wash her face and gave her some good lotion - my mom has very sensitive skin so everything makes her break out. Hopefully the stuff we used today didn't do that to her. My cousin Elizabeth and her family arrived about then and so we took my mom for a ride around and got her outside in the nice sunshine.
We said goodbye to Elizabeth and went back to the room to meet Shirley and the physical therapist and my mom was off to therapy.
I am noticing that she is really short of breath, a reason for all the extreme tiredness, she talks about it a lot too. I tried to make her see that when she sits up she breathes better..hopefully she will remember that. My mom seems oddly confused to me....sometimes very clear but other times a tad off....is this the "sundowner" syndrome I have heard about??? How can I help her with clarity?? Is this the thing the surgeon talked about that would last a few weeks?? Does she have something else going on?? I am going to be there early tomorrow so that I can get ahold of the doctor to find all this out.
I am trying to balance me with all of this....I feel bad when I am not there and guilty when I am not thinking about my mom for a minute. I know my mom has the potential for beating all of this and getting better and getting home now she just needs to know it. I think my mom is a little down and feeling like it is impossible to get back to the way she was....it is going to be a hell of a lot of work but she has to fight. I keep thinking that if only this pneumonia would go away that would increase her appetite and her energy and hopefully her oxygen......we shall see.
Visiting is good....she needs the distraction - it will make the day go by faster and make it so she doesn't sleep all day. I appreciate it. Thanks again.
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