Day 46

Today was a better day than yesterday....I got there about 1pm and she was lying in bed without oxygen again.  Her oxygen numbers were good enough not be on it.  Her lunch tray was sitting untouched on her table.  I tried to get her up and she said..."I'm cold" so told her to get up and she can sit on the patio and eat her lunch, she got in the wheelchair.  I took her to the patio with the help of a CNA.  It was warm out there and my mom ate a little...but she drank almost all of her liquid.  She was very clear today while I was there.  The speech therapist came outside while she was eating and talked to her about keeping her mind busy which would help to keep it a bit clearer.  Jen said that she would put together a packet to keep my mom's mind busy and she said that she was writing an order to get my mom to the dining room for lunch each day.  WOW my mom agreed to that.  Jen thought that the interactions would be important not to mention that she eats and drinks a lot better when she is upright instead of lying in bed.

I decided to try a new strategy in regards to the "mask" and not bring it up....so I didn't BUT my mom did.  She was talking to Jen (speech therapist) and she said that she had been told that the best way to keep her mind clear was to wear the Bi-PAP....did I hear that correctly??  Jen confirmed what she was saying (I said nothing) Jen explained how Co2 can be very bad for all systems in your body and using the mask at night would help to keep the good air.  I did ask/say that I thought that this mask was only going to be temporary until she builds her strength up again.  She already was doing so good without the oxygen tube for a long part of the day.  We shall see.

Then it was time for therapy...I decided that this was a good time to run to my moms house to get a couple of things she needed, an iced latte and a croissant warmed up.  When I walked in she was walking down the hallway back to her room.  She was standing taller than usual, she is usually hunched over...still she had no oxygen on and her number was 98 which is normal for everyone.  Wow what was going on? was she going to get to go home without oxygen?  Tomorrow we will know if they are discharging her on Thursday...we shall see.

If anyone if available to peek in on her tomorrow morning that would be awesome as I am getting a root canal and probably can not get there anytime before 130pm...thanks all.  She just does so much better when she is socially stimulated.

Good night all

Day 45

Today my mom had a few visitors, I could see the names in the book.  Someone brought her home-grown roses.  I arrived about 1pm, I had to wait for a sitter as it is easier without kids, Sonia had just arrived too.  We walked into my moms room together.  I had talked with to my mom about 9:15 and she was eating breakfast and I told her that I would be there in the early afternoon.  When we got into her room she was very asleep and didn't wake up for us at all.  Her lunch was sitting there completely untouched.

Evelyn came to me and told me that my mom had been up for awhile and had been to physical therapy..ok so she is tired from that.  After about an hour Sonia decided to leave.  My mom had heard some of our conversation as she would interject little comments every now and then.  Evelyn told me that she had been waiting for me to arrive...ok so I was here...and she was sleeping and not about to wake up...I tried and tried - so I just grabbed her laundry and left at 2:30....I am not going to lie I felt frustrated.  I could tell that she "probably" had not worn that stupid mask which meant that she didn't wear much oxygen.  I think it is a vicious circle...no mask....no oxygen....mental status a bit down.  I can not help but worry about her home coming...although I do believe that home is her best bet but I am concerned none the less.

I have not noticed her trying to do any crosswords lately...or reading too much.  I think SNF's are not good for one's psyche because the patients tend to sit in their beds or sleep a lot which reeks havoc on their night time sleep - another vicious cycle.  I sure hope that getting home will cure my mom of that and that she will do what she needs to do to continue healing.  It has to be so hard to have been away from home for so long and to be in a hospital and not on vacation.  She has been through soooooo much but I really feel that it is important that she not wallow too much in that....that she redirect her frustration into getting on her feet completely.

Virginia and Darryl went to see her this afternoon and said that she was great, sitting and talking to them for awhile...they stayed about an hour.  Virginia said that they chatted about lots of things and had a nice visit...and she promised my mom that she would make minestrone soup when she gets home....something to look forward too.  Virginia did bring up the dreaded mask...and my mom told her to "go to %$&*" if you know my mom then that is so her....and Virginia told her to not hold back and tell them how she feels... I think that I am going to try not to bring up the mask - do it like my kids....IGNORE it and see if it takes care of itself - she is going to do what she is going to do....

Take care all.  Thanks for everything

Day 44

Saturday....I decided not to call before I went since yesterday she accused me of waking 5 people.  Thought I would wait and see what she would say.  I arrived there about 11am and my mom was fast asleep her breakfast pretty much not touched....Evelyn, the CNA, came in and told me that my mom had a shower...that is why she is tired??  She opened one eye and I said hi...she went back to sleep.  After awhile I asked her if I could put the mask on to see how loud it was (she makes it sound like it is a loud as a freight train) I put it on her and watched my watch....I am not kidding when I say there was NO sound...I kept checking it as I didn't think it was on.  There is a little sound in the mask of air moving but it is silent when it is on her face.  Within 10 minutes she was messing with it....I said "no just leave it alone", 5 minutes later again I said the same....3 minutes later it was ripped off.....I am not sure what to do about it.  When she gets home I am going to take her to Apria and let them tell her everything about it and try on a bunch of masks.  I am interested to see how this goes.

She snoozed off and on until 12:30 then she had to get up to use the restroom...so I really didn't let her lay down again...lunch came and she sat at the side of her bed...she at first tried while she was laying down but I reminded her that she could choke in that position.  So she gave in and sat up although she didn't eat much...she did take a few bites.  I kind of forced her to drink water, OJ and 7-Up.  The PT came in and said that she would be in a 1:00 to take her to therapy....right at 1 my said "I have to go"..."go where?" I said....she just pointed out the door....ok.  The therapist came in a little after 1:30 and she said that she would wait and come back since my mom was eating...my mom started to say "OK" and I chimed in and said "oh no she's done eating" so off she went.

Today she did leg exercises with weights...and a balloon to squeeze between her knees (note to self - cheap way to tighten up the inner thigh).  She seems to get easily distracted by what is going on...she was paying attention to the others in the room and the PT had to redirect her a few times (this is just like preschool).  She did good maintaining her Oxygen level while she worked out - (she wasn't even wearing it).  She walked all the way back to her room again.  They left the oxygen off and her numbers stayed in the ok range.  Maybe as long as she stays elevated then she can maintain good oxygen.  She does get a hospital bed at home so she can sleep at an angle.  Tonight my kids and I waited at my mom's house for Apria to deliver a bed, commode, and wheelchair...they were supposed to come at 7pm and got there at 8:30...my girls are usually in bed by 6:30pm...so they were way off.

It is 10:30pm and I just called to check on my mom and they say that she walked from her bed almost out of the room.....she has an alarm on her because they do not want them to get up on their own.  Also she had taken her mask off already.

Just in case you need it here is the exact address to Windsor Elk Grove 9461 Batey Ave. Elk Grove, Ca 95624

Thank you everyone for your visits my mom is pretty good about remembering who has been there.  Take care.

Day 43

Today I went to Windsor about 1'ish.  My mom was sitting at the side of her bed leaning on her table...with her lunch partly eaten.  I could see that the had only taken a couple of bites...she really isn't eating much.  I really want her to drink her fluids but she doesn't do that too good either.  She was pretty good about drinking a fair amount of water before this all happened but not right now.  She was dressed in regular clothes as compared to yesterday when she had a hospital gown on.

My mom said that Arlene had been there with another friend (I can not remember her name-sorry) and she said they had a nice visit....

I had called on my way to work to here how she had done with the mask....no surprise that she had pulled it off many times.  I told them to leave it on until she is awake instead of shutting it down at 6am they said they would.  I also told them to put it on earlier last night which they did....they put it on about 8:30 and by 10pm she has taken it off 2x and one of the times totally took it apart and the mask ended up under the bed.

After a few minutes she told me a story about nurses yelling at her because I have been calling in the middle of the night to check on her....I assured her that I am not calling as I am asleep....she had me go and get a particular nurse (which I did)..she asked the nurse about me calling....and then retold an interesting story that really sounded like a dream....the nurse just nodded and winked at me.  She made me go out and asked the front desk...and her morning therapist says that she had told her the same story.  Interesting...she is still not completely clear although once she starts getting into conversation everything clears up and she can keep up with most of the conversation.

Her occupational therapist came in to take her to therapy.  She didn't really want to go but I told her that I was going with her and she said "well ok then".  The therapist told me that she has been working with my mom and dressing and grooming....she got my mom's hairbrush and handed it to my mom...who turned and tried to hand it to me so I could brush her hair....the therapist said "no mame you brush your own hair...come on now" and my mom did...I giggled a little.  In the therapy room they removed the oxygen and my mom maintained a good level the whole time.....she had to do 3sets of 10 arm lifts straight up with 2lbs weights in her hands...it was funny that when the OT turned her back my mom quit and said "I did 10"....I "helped" her realize that she had only done one set so she did 2 more sets.  She also had to stand and catch a beach ball and then throw it back all while maintaining her balance...she did good.  Then the OT had me hit a balloon to her in all directions and she had to bat it back....when she was done (she said she was done and sat down) she said "see I beat you" to me.  Ann and Ray arrived at the end of her session and the therapist had my mom walk down the hall to the main room where the 4 of us sat and talked.  My mom was very clear at this point, keeping up well with the conversation and interjecting when appropriate, which makes me believe that she will be fully back at some point.

Anyone who would like to visit would be great....she does a lot better when she is kept engaged...she may not recognize you at first glance especially if she has just awoken but soon it all becomes clear for her and she is right there in the conversation.

You all rock...thank you all for your support.

Day 42

Tonight marks the 6 week mark since this all began.  My mom ruptured her abdominal aortic aneurysm at 7pm on March 15...hard to believe that it has been 6 long weeks.  Her surgeon said that the pains of surgery would be gone by this time and I think he is right...BUT he also said that at the 6 month mark she would feel more like herself.  I think that with her setbacks it could take just a wee bit longer.

Today I called at 7:30am to check on my mom on my way to work (day 2 - it feels good being back) and they told me she did OK last night.  Pulled the mask off a few times but had a good dinner and was friendly and happy.  She was still asleep this morning so I didn't try to talk to her.  I didn't go to Windsor until the "Care Conference" at 2:30pm.  This meeting was just like and IEP (special education) meeting.  The 3 people present each had things to say about my mom's progress....the kitchen lady (dietician) said that my mom was still getting a no salt added diet (not easy for someone who likes salt) and they were still chopping it up to make it easier for her to chew and swallow - she said that my mom is eating about 50% of her diet.  The social service person wanted me to fill out another DNR form...the 3rd one at this place...they are worded so crazy that it gets confusing when filling it out...hopefully that was the last one I had to fill out.  The other person there was Joesphil, the discharge coordinator for Kaiser patients, she read the report of the physical therapists.  She said that my mom had been walking 250feet with a walker and no assist from the therapists...that she walks to the right (a side winder) and she needed to verbal cues to stay "inside" the walker as she tended to lean too much onto it.  They were currently working on her oxygen saturations (keeping her oxygen up to normal without the use of O2).  As I sat there I thought "ok so when is she being discharged?" because that wasn't even brought up....I thought that is what this was about.  We talked about her equipment that she already had and what she may need when she comes home.  They told me that the therapists would be training me on how to take care of her.  They talked about medic alert buttons and hospital beds and wheel chairs.  There would be a therapist to come over about 2x a week and a visiting nurse to check meds.  I shared with them how I am having a hard time completely tusting any SNF right now and that I question if the staff is telling me the truth or just telling me what I want to hear...they just listened. Then they asked me if I had any questions....YES "when is she being discharged?"  the answer was that there will be another meeting on Tuesday and then most likely it would be next Thursday....ok - so I have time to get it all together.

Shirley was with my mom this morning and she told me that my mom wasn't as "awake" as yesterday.  We all go in day to day and wonder what is the day going to bring?  Today seemed like a down day, my mom didn't really want to get out of bed.  I think today was a little "pity party".   She was a little pissy with me and told me that I was scaring everybody into believing that she was going to die...I told that maybe the events of the last 6 weeks scared them and not me.  I arrived in her room about 3pm and she was dozing on her bed.  I noticed right away that she didn't have her oxygen in her nose...I asked her and she said that "I don't need it anymore" - really??  So I excused myself to ask a staff person.  The nurse told me that they were testing her on room air and that my mom had a good number when she finished with the therapist - her number was 98 (yesterday Shirley told me that her number was 99) so I supported them trying especially after she came in and tested her and it was at 92 and when she breathed deeply it went up to 94.  I did call Sonia, who was coming next, and asked to have it checked before she left.  Thank goodness they had it checked (even though the nurse was sassy at them for asking) because her number was done to 86 and my mom was hallucinating that there were 2 men in the yard and a scary man in a trench coat trying to get into the place.  They told the nurse and I also called to talk to them about it.  I then asked to talk to my mom and she sounded ok just tired.

I talked with the staff before I left about putting the mask on earlier and they said they would and one of the CNA's told me that my mom had "reminded" them last night.  I was in shock and he said really - that when he had gone in to check vitals she said that no one had put the mask (she motioned over her face) on...WOW really........then quit pulling the f'en thing off mom.

I am hoping that she continues to get better with that mask....and I keep thinking that her confusion will get better at home...but I can not help but be nervous about her coming home and maybe 1 week more will help her....RIGHT???

Day 41

Today...I returned to work.  It was good to get back but I can not help but feel that I would rather be at Windsor watching over things.  My mom stays awake more when someone is around otherwise she tends to lay in bed and sleep which is bad for her Co2 retention - vicious cycle.

My mom still complains about the stupid mask and the nurse told me that she pulled it off so much last night that the night nurse had to go in every hour instead of every two hours.  Bummer I guess the chat about the importance was not enough.  I still worry that she must not totally get it and wondering if it is because she just isn't all there yet OR is because she is stubborn (I am thinking a little of both).  So today I went on a hunt for a smaller mask and I found one.  I went back to WIndsor to try it on her and "show" her that it is much smaller then the one she has.  The man at Atria Medical told me how to see if it was the right size and if it wasn't then a "small" could be ordered.  I think she needs the small but I am waiting to talk to the staff in the morning to see if she left it on.  PLEASE mom just do this - the alternative is not what you want...I know, you told me.

My mom told me that she was tired....nothing new - she usually gets tired after lunch.  She told me that she had "really" worked out and she had been very busy with the therapists.  Shirley told me that my mom had walked a long distance with a walker and the therapist, she had also done some stretching.  SO I understand that she is tired.  They put her on a "normal" diet...she had been having all of her food ground up so she wouldn't choke (a fear the doctors had especially after being intubated her seizures) - because she had been intubated she stands a bigger chance of aspirating.  She was happy about the change and said that the food was a little better.  I still worry that she doesn't drink very much that is another reason I like being there....I can remind her.

Tomorrow at 2:30 I will be attending a "Care Conference" for my mom.  I guess they will be telling me what my mom will need when she goes home.  I am still thinking about how it can all work.  Will she be able to be alone?  Will she need someone with her all the time?  I am sure that she will need someone there most of the time for the first couple of weeks to a month.  Tonight I talked to Deborah - my friend and fabulous nurse - and she said that she believes too that my mom will be able to be alone at some point but for now it would be very important that she be not alone until she is really steady.

Tomorrow will be very informative.  Thanks for visiting my mom...it really means a lot.  And thank you all so much for the "cyber" support I really feel it.

Day 40

40 days...hard to believe.  Today I got a little done in my own house which felt good...I wish laundry would do its self.  So I arrived at Windsor about 11am.  I had called my mom earlier to let her know I wouldn't be there as early that I was doing some laundry including some of hers so she was fine as she was in need of the clothes I was washing.

I went in looking for Josephil who was still in the meeting and I let the desk know that I wanted to talk to her before she left...they said they would give her the message.  I talked to mom a little and helped her get dressed.  She is still unsteady but able to stand and move from chair to bed with little help.  I asked her how she slept and she ok but she took the mask off a few times.  About then Shirley arrived with In & Out Burgers and milkshakes.  My mom ate a cheeseburger and talked about how slow she is eating these days - she has always been a slow eater but now it was even slower.  She finished about half and I the other half.  We all sat and talked about my moms dislike of the mask and again Shirley and I repeated how important it was and my mom got frustrated with us and said that we had no idea how bad the "bastard" was...we both agreed that it may be annoying but many people that we all knew used one.  I told my mom that I would sleep in one to see how bad it is.  She seemed to be having a hard time coming to grips with the changes that have occurred (her battle scars).  We kept telling her that is a matter of life and death that she wear it or one day we would find her unconscious and then what??  She asked if we would wear one - and I said ABSOLUTELY that if that was all I had to do to stay alive I most certainly would wear one...to get to be with my family....YES no problem.  Shirley said YES as well.  My mom seems to be in a bit a pity-party again....after the initial surgery I heard her say many times how hard it is and how big of a deal she had.....There is no doubt that it all sucks.....BUT, as I told her, the alternative is much worse.  I was really frustrated and kind of hurt thinking that she didn't want to live bad enough to wear the f'en thing.  We shall see what happens.  I am concerned about how she will handle it at home when she takes it off in the hospital at least there are nurses making rounds every 2 hours and can put it on.  I am hoping that she gets used to it before she goes home.

Overall she seems pretty clear although she does get confused off and on...and sometimes when she is trying to explain something I can see that she knows what she wants to say she just can't get it out correctly and get frustrated when I ask for clarity.

I talked with Josephil finally and she told me that they decided to continue their work with my mom and that there would be a "care conference" on Thursday that would include me and they would talk about her needs and how they can be met at home....that she would probably be discharged Monday or Tuesday of next week.  Wow...there is a lot to do before she gets home....I am going to get LifeAlert hooked up and equipment will need to be delivered, a care person figured in, friends to come and go and someone to sleep there at least for awhile.  I really believe that much of this will be temporary....I just hope that my mom wants to live bad enough to wear the mask but it is ultimately her decision.

Well tomorrow I will try to return to work so any visitors in the morning would be great....I will be there in the afternoons.  Thank you

angels angels everywhere....Kathy and Steve, Virginia and Darryl, Shirley and the staff at Windsor

Day 39

I arrived at Windsor about 9am...my mom sitting at the side of her bed taking her medication, the nurse watching her.  Breakfast was on her tray....scrambled eggs that honestly looked a yellow bouncy ball, toast with jelly...my mom said that is was not good and that she couldn't even stomach the eggs as they tasted like paste.  I don't blame her it was so not appetizing.  Interesting that the food is so bad when so many patients need to eat to gather strength.

My mom said that she had slept ok since yesterday was so busy.  She told me that the nurses were yelling at her about keeping the mask on..that it was because of me...she rolled her eyes and was visible pissy about it....I asked her if she would like it better if I didn't care...she just looked at me.  I told her that it will probably not be forever but for now if she doesn't wear it, and she has a choice, then she will have to suffer the consequence....NO we would have to suffer.  I think she gets it...but will she wear it at home?????

Talked with Josephil (discharge coordinator) and she told me that the decision for discharge has not been made yet and that tomorrow would be the big meeting with the therapist, nurses, doctor and Josephil (all the kaiser people) and there would be a plan then.  I asked her about in-home help...she said that my mom would have to qualify for medi-cal, which she doesn't at this time.  Josephil told me that my mom would get therapy at home 2-3x a week and a visiting nurse would see her 1-2x a week.  I am interested to see what exactly my mom can do for herself...it has been a long time since she has been self reliant I know she wants to try but I also know that she is nervous.  I invision having to hire someone for a few hours a day and then piecing it together with myself and friends.  I know that there are resources in The Grove like the Senior Center...so I will be researching those types of things and what they offer.  I can hook my mom up to cyber-grocery shopping at Bel-Air and it can just get delivered....ok realistically I will probably order for her - wink/smile.

I left my mom about 2:30 - she was good and tired as she had 5 visitors all at once.

Ok so I am going to try and go back to work on Wednesday....I appreciate all you visitors as it occupies my mom and keeps her from sleeping all day...thank you all

Some more angels I didn't mention yesterday....Inger, Birgit hope you feel better too, Inga, Kirstin, Lalish and Lilee - you all rock

day 38

Today was a visiting extravaganza my mom had Shirley, Brenda, Jan, Krystyna, me, Matthew, Sonia and their twins, Alina, Christian and Sonia.  I know that when I left at 2:30 my mom was tired and had not yet had a nap and it seems she didn't get a nap until it was bedtime....good maybe she will sleep well tonight... sleep well.  Thank you all for the visit....as the physical therapist said - visits are the best therapy

Today my mom asked me a lot about what has happened to her.  She wanted to know what the doctors all said about her and her prognosis.  She seemed pretty clear but admitted that she feels a bit cloudy sometimes.  She is surprised that she has been through all these different huge events.  I see some frustration in her right now...she is a bit "pissed" (as she put it) about understanding WHY she has to wear this machine (Bi-PAP) because she really hates it.  I keep reminding her that she will die without it and she said "I don't understand how this happened", why she has to wear it.  I told her that there is a chance that she won't have to use it forever - I kind of think that once she gets going more and sitting more and eating better that some of this will resolve itself.  I agreed with her that she has been through a lot but that she still has to fight to get herself back completely.

I have been concerned about the fact that she may be coming home as early as Tuesday as she is done with her antibiotics and Kaiser told me that she would not qualify for PT according to Medicare.  Today I talked to the manager and he told me that she would have a 48 hour notice of discharge - well that means it won't be on Tuesday.  Tomorrow I will be going to Windsor to talk to the discharge coordinator for Kaiser patients.  He also mentioned that Medicare pays for home care if it is found that she still needs it...YaHoo - I have been totally worrying about what we were going to do...BUT I really won't know until tomorrow.

For me I believe that things happen for different reasons and lessons are learned from these things..... it takes a village - thank you all

I want to thank my angels out there....Shirley, Marilyn, George,  Windtberg's, Virginia (Dona) and Darryl, Stephanie, Elizabeth and her family, Alina and her family, Tammy and her family.  And everyone else who has sent their love and support....you all rock..I am feeling it and passing it on to my mom

Day 37

made 2 trips to Windsor today.  The first one was about 10am she was lying in bed and they wanted to take her and weigh her.  I had Mia with me and Michael and Malena were in the car.....I thought seeing them would be motivation to what she needs to do.  My mom really wanted to get her hair done...so I went and talked to the hair lady and scheduled an appointment for the afternoon.  I was coming back without my kids so I could relax and to get money to my mom for her hair.  I was excited to see my mom had her glasses and watch on - they had been missing since the last trip to trip to the ER.

The kids and I sat outside with my mom.  She had been to her first evaluation with physical therapy but the therapist decided to cut it short because we were there.  The therapist told me that visits are the best therapy.  We sat outside in the warm air and watched the kids on the grass.  Michael and his oowa sat and talked too.  Michael has always been very close to my mom and he has had a hard time with all the changes so I was glad that he was just sitting with her.  After about an hour we were leaving and Shirley arrived so my mom and her sat outside again.  Shirley said that they had a good visit.  When I got beck to WIndsor about 135 my mom was lying in bed and her friend Marilyn was there...I could see that my mom was very tired and having a hard time staying awake and she had not touched her lunch (I wouldn't either) - yesterday my mom asked for an In & Out burger...I should have brought one or at least a vanilla milkshake.  I stayed for a little while and then I let her sleep.

I think my mom gets a little down sometimes (not that she would admit it) but I often think about how much her life has changed.  My mom prides herself on her independence and right now she is pretty dependent.  It is sometimes hard to watch...but I believe she can come back from all of this if she can just get it done.  I have been thinking a lot about my mom coming home...knowing that she will probably bounce back faster in her own environment, with her own food, and her own bed....but I am concerned that she is not totally ready to be completely on her own.  She is still healing from the surgery let alone the other 2 big hits.  I think that the doctor is right about the amount of time it will take for her to feel like herself....I just hope she can be patient and do all that she needs to do so that she can achieve her independence again....we shall see.

Anyone who wants to visit is welcome she is in room 22B and the address is 9461 Batey Avenue

Elk Grove, California 95624 (916) 685-9525.  If she isn't in her room she is probably with Physical Therapy.  I make her get in the wheel chair and then take her outside the staff there will get her situated for you.  Thank you all.  Michelle

Day 36

Hello all.  Today they moved my mom again.....to Windsor in Elk Grove on Batey.  I spent the whole day at the hospital waiting for this move and it did not occur until 4:30.  Crazy....

My mom seemed very clear today - not completely back to normal but close.  I think it through her off to move again but I hope that doesn't set her back.  I am not happy with the move but was told that to contest the move would only prolong the inevitable so I didn't fight it.

She was so excited to see her dyne (down comforter) she was looking forward to sleeping.  She ate a little dinner at WIndsor before I left and was watching tv and reading her Danish magazine.  Today she helped me with a crossword puzzle.

Today the doctor told her again how important the breathing machine was and I asked her why it was so important to wear it all night and she said "she would die".  I am still not completely convinced that she gets it....but she will.  Last night they had her wear "hers" and she kept it on better than the hospital one...she did not take it off except for once but they put it right back on.  I just hope that Windsor checks on her so they can put it back on - I had the respiratory therapist at Kaiser fit it exactly to my mom so that Windsor could just put it on her and she could go to sleep.  I told them to check her often and she said that they were in there every 2 hours so I know that she can be without it for 2 hours.  At some point my mom will be evaluated in a sleep study to see exactly where her breathing changes....but that will be later in clinic.  Also she will get an EEG in clinic at some point.....there has been a referral to neurology.

SO if you would like to visit my mom that would be great....it would be appreciated....thanks

Day 35

7:30 am my mom called me on my cell phone....she talked with Michael and then me...she just said hello and I asked her if she wanted a vanilla latte and she said yes....so I brought her one.  It has now been one week exactly since she arrived at Kaiser for the 3rd time and tomorrow marks 5 weeks since this all began.
When I arrived she was sleeping a little but I woke her.  A little while later Gunjit came in and got my mom up and gave her a bath and put her in a chair...it was 8:45.  She ate a little more food and then asked for the paper - she really wanted to do the crossword puzzle from Monday but I only had yesterday (she said it would be too hard), then I suggested doing the puzzle in the people magazine.  We had good conversation, she was clearer than yesterday.

The doctor came in...a new one since the dr. who has had her for the last week is now off rounds and it is Dr. Chu's turn, this drives me crazy about the health system do doctor follows the patient the whole way through - whatever happened to continuity of care???  Anyways Dr. Chu came in and said to my mom that she has been through so much and that his plan was to discharge her today....but after reading her chart and talking to the other doctor they thought that one more night would be good.  I was very glad to hear this as the last 2 events have occurred on Thursday's.  He said that she still has 5 days on the IV antibiotics so they could do those at the SNF and for each day she stays at the regular hospital she increases her chances of getting something new like another infection.  He also talked to her about the Bi-PAP machine and that this was going to save her life without it she will die as the doctors believe that my mom has a little brain damage due to the fact that she needed CPR on the operating table and her Co2 status (she is considered a Co2 retainer) which if those numbers climb to the danger zone she will just stop breathing.  I am still not convinced that my mom totally "gets it" but the more we all tell her the more it should sink in.  He explained that my mom's ordeal was like being wounded in war....she can be repaired but she will never be quite the same...she will have to carry "battle scars" for the rest of her life, and one of those scars was the Co2 problem and the breathing problem.  She will be moving tomorrow if nothing changes....crap.

Lunch came while Shirley was there,  I had run home to get her Bi-PAP machine so the respiratory therapists (RT's) could work with her on her own machine, she didn't eat much of the main course but she did eat yoghurt and drink a little of the protein drink.  Tomorrow I am going to have the RT's show me how to put the machine on so I can show the SNF.

Physical therapy came and my mom got up from the chair and walked with a walker about 50 feet back and forth....they practiced getting into bed as well as doing leg lifts and such.  When they were done my mom said that she was tired so they PT left her in the bed and told me that my mom is doing really well.  The PT told me that based on what she can do she would not qualify for the SNF but the fact that she needs IV meds she would.  Her guess is that my mom will be there only 5 days and she will get PT during her stay but that she would be getting it at home 2-3x a week...shit....my mom is going home in 5 days??????  OH man - is she ready for that.....???  A little panic went through me...how was this going to happen??  Stay tuned.........................

Overall it was a good day....Sonia called and said my mom was acting totally normal and they had a good visit and she ate about 1/2 her dinner.  My brother went up there now and he will call soon with his report.  Until tomorrow

Day 34

My morning started with a phone call at 7:30am from my mom she was calling to say hi and tell me that she was on the Bi-PAP machine.  I told her to leave it on and that I was on my way.  My mom has not talked to me on the phone since the end of March when she called from Kaiser hospital after the first surgery.  I got to the hospital about 8:30 to find my mom asleep and breathing into the machine.  She slept for about 1.5 hours before they took her off.  She woke up and look fresh and alert and needing to use the toilet.  Deborah was there and helped her up.  Afterwards we sat her in a chair for breakfast but she was convinced that she had eaten at 4:30 in the morning and there was no convincing her otherwise even the doctor (later) tried to tell her that they do not serve food at that time.  Her breathing was very calm and she and I had short conversations about nothing.  A while later the nurses assistant came in to give my mom a bath so I went down and got us a coffee.  I arrived back at the room as they were finishing her hair wet still.  She asked if I could comb her hair and she sipped her vanilla latte.  We watched a little tv and she told me what the program line-up would be.

She fell asleep for about an hour in the chair and then lunch came.  She ate very little of the main course but did eat a lot of yoghurt.  She commented that her breathing was better but that she was still tired.  The doctor visited before lunch and she told him that she felt better.  It is funny how alert she is sometimes when he gets there....then goes to sleep when he leaves.  He did mention that it was getting time to talk about her moving to the nursing home again so that she could get the physical therapy she needs.  I am not thrilled with the idea but know that this is the next step.  Hopeful all will go well and she will be there for a couple of weeks and then we will see what will happen next.

After lunch (she ate mostly yogurt again) and 2 hours in the chair she wanted to sleep so I went and got a bite to eat.  I have to admit that the cafeteria food isn't all that bad.  When I came back she was still sleeping.  She woke enough for me to tell her that I was going to be going as I had to go and pick up the kids (she asks every morning where they are).  We talked about her seeing them and I told her that we would wait until she moved to the next place...."where would that be?" she asked...." I really want to go to my house."  I told her I knew that she did and she admitted that she wasn't quite ready for that yet.

I left about 2:45 and Shirley arrived about then (although we did not see each other).  Shirley said that it was a good visit and that my mom slept just a little and then talked and watched tv with her.  John and Leif showed up about 5'ish.  She ate a good dinner - all her meatloaf, milk and yoghurt.  Leif said they had a good visit and he left about 7'ish.  At 9:45 this evening I called to check on her and the nurse was in her room.  The nurse said that she was doing good and my mom told me good night and that she will see me in the morning.

All in all I think this was the best day this round.  Tomorrow she gets a new doctor as they rotate out every week - I really do not like this system as one doctor gets to know her and then it is a new doctor.  I am sure the topic of discharge will come up tomorrow - ugh!!!  Until then....good night all (god nat alle)

Day 33

Today I arrived at about 8:30 to my mom sitting in bed with her breakfast tray still there...I could see she had eaten a good amount of oatmeal - she even told me that she ate "a lot".  I asked her how she felt and she said she was very tired.  Shortly there after she fell asleep.  I gave her a mini-manicure that she completely slept through...I even soaked her hands in warm water worried that she would wet the bed (a trick we did as kids at sleepover - put someone's hand in water and they pee) luckily she didn't.  I tried many times to wake her and she would rouse a little but not really wake up.  Deborah came by to check on her and was worried that she was so tired, her nurses kept checking on her for the same reason.  She assured me that they all were really trying to get to the bottom of all of this.  Deborah showed me my moms chart and told me that her blood work showed mild anemia, and the list of different tests that they had done.  They have done so many tests which makes me believe that they are really trying to get to the bottom of all of this.

The doctor came by and my mom barely woke up....he asked her where she was and she said "I don't know", so he told her and she agreed with him.  He assured me that they would not be rusher her out as he really wants my mom to be able to heal so that she can finally fully recover.  She has had 3 major events in the last month and she really isn't even half recovered from the surgery.  Deborah said today that she really believes that my mom can get back to a very good place but we both agreed that her body could not take much more of this big events.  I just hope they keep her long enough so that she can get on top of this.  I remember the surgeon saying that she needed a minimum of 6 weeks just to recover from the surgery not to mention the respiratory failure and the 3 grand mal seizures.  Today I ran into Dr. Brawley (her surgeon) in the hall and he was shocked to hear that she was back in there...he said he would go and see her.

As I sat there...I kept thinking about her Co2's and how they were probably climbing upwards accounting for the sleepiness.....about 2:30 this afternoon they came in to take blood for a blood gas...yahoo now we will know.  I asked how long it took to get the results and they said about 15 minutes.....her Co2's were high again 68 (norm 35-45) they also said that the ph of her blood was in the normal range meaning that my mom's body has the ability to handle more Co2's then mine could most likely because she does have COPD.  I will say that the nurses and respiratory therapists were very attentive to my mom and her sleepiness.  I really have been very happy with my mom's care at Kaiser...I also feel much better being there and being able to help out and take a little care of my mom too.

This afternoon Shirley was with my mom and they put her on the Bi-PAP machine again...my mom was not happy to see that machine again.  But they wanted to try it for a couple of hours to see how she was..she did it and lasted the 2 hours.  Shirley said too that my mom was very sleepy today and they didn't talk too much but my mom would exchange eye glances occasionally.  Sonia and her girls arrived later in the afternoon (about 5:00) and my mom was still on the machine.  Sonia told me that when they took the Bi-PAP machine off that my mom was very alert and awake and was ready for some dinner.  Sonia had frozen Ensure and my mom ate 1/2 of the container....then dinner came and she ate very well. They left her about 7pm and she had just fallen asleep again.  At 8:30 I talked to her nurse and said that maybe they should offer ear plugs and a sleeping pill tonight so that my mom would leave the machine on.  It will be interesting to see if my mom is different tomorrow after a night of wearing the machine.  I know she hates this machine and I know that the one's you can get at home are smaller and quieter.

Thank you again for all your well wishes....until tomorrow...take care

Day 32

Today I arrived about 8:30 to find that my mom had just had a breathing treatment...she always seems a bit clearer after the treatment...it increases her oxygen level to about 99%.  She still had her breakfast, she had not eaten much...I had brought a yoghurt and asked her if she wanted that so she ate a bit eventually eating the whole container, but not much else.  She seems to be drinking ok but if someone isn't there then she wouldn't drink.  The newspaper was delivered and my mom tried to read it but kept falling asleep.  It seems that she dreams because she opens her eyes, says something and then is fast asleep again.

The doctor came in and said that the influenza tests were negative so we could stop wearing the masks - thank goodness they are really uncomfortable - he also looked perplexed when trying to figure out what is going on...he asked her a few questions and she answered them pretty well only missing a couple.  He moved her a little and she said ouch around her neck area....she has had a stiff neck so he ordered a ct scan to see if anything was going on...it came back negative.  They did a chest xray and found that she had congestion so he ordered meds to rid her body of fluids.  I asked him if the cause of the seizures could end up being a mystery and he said yes.  That is annoying as if it were something else then that could probably be treated but if is unknown then what??

She is weak but was able to stand with assistance when physical therapy moved her from the bed to a chair...she sat there for almost 2 hours...she did fall asleep a lot but sat there just the same.  I still feel that some of the weakness is related to her oxygen situation but they have not done another blood gas test to check her Co2's.  I think I am really going to ask a lot tomorrow about doing a blood gas.  She did get a little morphine about 11am which could account for some of her sleepiness but it shouldn't still be in affect at 8 pm should it??

For lunch and dinner she didn't each much either...but she did eat almost another container of yoghurt - at least there is protein in yoghurt.  It is hard to force a person to eat...but she must eat in order to get stronger.

The patient care coordinator came in today again....we talked about the idea of my mom going home with help as well as the possibility of going back to a SNF for rehab - that is a hard one.  But I am not sure what all is available if she goes home.  I do know that she needs a lot right now and I wish they could keep her in the hospital until she was a lot stronger...so she could go home.  I just really think that her best chance to heal will be at home but the logistics of it all is a bit overwhelming and confusing.  I also talked to Shirley about the "what if" my mom can't go home .....what are the options...I am not totally sure - I just really hope that she can go home to herself.

Day 31

arrived to find my mom talking with Shirley...she said hi to me but it looked like she couldn't turn her head.  Her neck is stiff and painful probably from the neurological tests done on Thursday.  A little while later she asked Shirley where I was.   Shirley told me that the doctor had already been there and he said that the pathology came back that it was not Herpes Encephalitis meaning that she still may have encephalitis but that the herpes test was negative.  They ran a lot of different tests that we should have answers for this week.  They are continuing the current course of antibiotics as my mom seems to be improving on them.

The doctor also said that she needs to eat more so she can regain her strength - she mainly eats the fruit but she really needs the protein - I had thought that adding a teaspoon of protein powder to everything may help.  There is an order to stop the IV fluids which means that she will have to drink more.  And she will be getting the Incentive spirometer - the breathing thing that she will have to do 10x per hour.

I realized that not only are her glasses missing but so is her watch...I went to the ER to see if they may be in lost and found but no so they gave me another place to check tomorrow.  Her glasses are gone but I reported them to Windsor and I will call them if the watch doesn't show up at Kaiser.

My mom still is showing signs of confusion although it is a bit better each day.  She is good about answering the questions the doctor or nurses asks but as the day and gets them right about 80-90% of the time but when I sit with her for awhile different things emerge...like she thinks she sees something or thinks that she's been somewhere...and she gets a bit mad when we explain that whatever she is talking about really isn't there.  I feel bad for her and sometimes wonder if I should just play along instead of correcting her.  I am really interested to see what all the tests show, if they give us a reason for the seizures as well as the confusion.

The discharge nurse came in today and I talked to her but I really didn't want to....I don't trust that they have the patient's best interest at heart...she told me that my mom was lucky to have advocates as she works with patients who have no one.  She asked what our plan was and I told her that I wanted to weigh all the options....home care vs. SNF (not my fav).  I can not help but feel that my mom (and anyone else for that matter) would heal better and faster in their own environment but the logistics are a bit confusing for me.

The physical therapy team was supposed to come in today to assess my mom's abilities but I never saw them - I am hoping that they came by so she can get started on a little movement.  I want to see what she can do...as she was doing really good last Wednesday and I had been hopeful that she was well on her way to recuperation....I hope that this hasn't taken her too far back.

Thank you again for all your well wishes....as the doctor told me today (he said he went back over all of her chart) my mom has made it through so much...she shouldn't even be here....she has climbed her way back from hell....her body has taken a very large hit and she is just going to take time to get back.  Friday marked 4 weeks since this all began.....her surgeon told me that she wouldn't even be "over" the surgery until at least 6 weeks.  It is going to be interesting to observe where this journey takes my mom and all of us on this trip with her.

Day 30

I arrived to see my mom about 10:30...Shirley was there and had been since about 8:00.  My mom said hi to me and recognized me....we all talked and she seemed much clearer than yesterday but still confused about some things.  My mom tried to tell me what she ate for breakfast but she couldn't seem to get the words out until Shirley helped her, she ate all her scrambled eggs and a little french toast and a little coffee from a straw.  She also tried to tell me her address with a little help.  She still thinks that she is home and was trying very hard to convince us that she was.  After a little while Shirley headed out to continue her day....I am grateful to have Shirley there, she is very good with my mom.

 We are back to wearing a plastic gowns, gloves and a mask until they know what exactly my mom has they want us to take every precaution - I really dislike the mask...and wish the plastic gown had some sort of magical weight loss effect.  I have to admit that I have a very hard time with all the waste....if you step out of the room you must discard everything and get new when you come back.  So I try not to leave and today I noticed that it helped the staff not waste too much as they could hand me things and I could put them where they go or turn off a button.  When my mom needed something I would just ring and tell them and they would happily bring it.

I was there when the doctor came in and he examined my mom and asked her questions....when was she born -she answered correctly with even the year, what month it was - she said October, what year is was - she said 2012, who I was - she said her daughter Michelle.  Good answers.  I asked him if the test results were back from the spinal tap and she said they were waiting for the pathology to come back but he believed that she has Herpes Encephalitis - so I asked about the treatment plan and he said that they had already started her on the antibiotics for it last night so hopefully they caught it early enough to get her better.  I read a bit about it so I am interested to see what the doctor has to say once we get the "official" confirmation from pathology.  In the meantime my friend Deborah (clinical nurse specialist) told to make sure they have her on delirium protocol...so I called the hospital tonight to tell them that.  They have her bed alarmed so that she doesn't get up OR if she does the bells and whistles for sound.  Basically it means that they need to keep a close eye on her.  One think I thought was interesting for this protocol was that they are supposed to let her sleep and not wake unnecessarily - she will be happy about that.

She ate a little lunch and a little dinner about 10% of her meal.  I hope that increases so that her strength can continue to get better.  Now they need to do a physical therapy evaluation and get her up so that she doesn't get stuck in a bed again.  Deborah wants me to push that issue tomorrow - I will be interested to see what she is able to do after this lastest set back.

I am interested to see what tomorrow brings...I told the doctor and the discharge nurse that I hope they are in no hurry to send my mom on her way....because my brother and I are very skeptical about the hurried way they move our mom through...I do not want her to leave quickly again...Kaiser hospital needs to keep her extra this time.  Our health system is very broken and it is very sad.  I only can hope that the people who make decisions would be in our families situation at least once so that they could see the "real" picture.

Thank you for your positive thoughts.  My mom seems to be like a timex watch....she takes a lickin and keeps on tickin

Day 29

Today I arrived at the hospital at 8:30 to find my mom with the tube in....she was moving around in a restless manner...and I told her that they would be getting the tube out.  I noticed on the monitor that she still had a little temperature (about 99-100) her cheeks were flushed and her hands were still restrained but I stood and held her and and she held mine.  A male nurse arrived and told me that he was going to put a pik line in (a special IV) and that I would have to leave, for sterile reasons, for about 30 minutes.  My friend Stephanie was on her way with a latte so I went and waited for her.  We returned to the room and the nurse said that x-ray was on their way to make sure the line was placed correctly and we would have to leave again....after xray they were going to take the tube out and I wouldn't be able to be in there for that either...so I decided to go and pick up her stuff from Windsor.

When I got back her tube was out and she was lying down....she was moving around a lot, seeming uncomfortable.  I talked to her and she reacted to me.  I feel so much better when she is in ICU..she has a nurse for 12 hours who has only one other patient so I feel that she is safe which makes me sleep better.

She is very confused with moments of clarity...she would answer little questions like whether or not she was cold, how many fingers we are showing her or how many kids she has and then there were questions like does a stone float on water...no answer although she thought about it...she said that she was at Kaiser and that it is April.  The confusion is stumping the doctors and being that she has a fever they are trying to rule out infections...so she has been tested for influenza (a test she got really mad about) and a spinal tap for meningitis.  I hope they find the answer.  She also has MRSA-could that we doing it.  We have to put a mask and gloves on whenever we go into the room.

She is speaking a lot of Danish and it seems like she is dreaming and then says something that I am not able to understand...a bit mumbly - but also in Danish.  I asked her tonight if she was married to someone named Ib and she smiled and said yes and how many children did they have and she said 2....so my mom is in there she just hasn't completely reamerged.....

Overall I am not sure how I feel....I am worried that she has sustained so much trauma that she will not be able to come back then I remember what a feisty person her she is......when I left the hospital I told her, in Danish, to sov godt (sleep well) and she said tak i lige mode (thanks the same to you).  I also told her that she was a good mom and she smiled.

Tomorrow is a new day and we shall see what it has in store for us.

Day 28

Well.......you are not going to believe this one...my mom is back at Kaiser in the ICU and she is intubated again.  I thought that I would go back to work today....school started at 8am and at 8:40 I received a call from Windsor letting me know that my mom had a grand mal seizure - WHAT???? did she just say....

I was with my mom from 9-3 yesterday and Sonia was there from 5-7 and Christian at 8pm.  My mom had had a good day and was sleeping when Christian showed up and we had a friend who was showing up at 9am today to check on how things were going.  I called at 7:30am and was told that my mom was walking around all night and the nurse had to stay with her.....I am not sure what that means - how could one person stay just with my mom when one person couldn't even come when they ring the bell?  SO I do not believe that someone stayed with her all night.  And if she was "walking" around then she didn't have her oxygen on as the tube doesn't reach.  I have reached a point where I just don't trust or believe what these people say...they are just covering their ass's.  The nurse was so determined to tell me my mom's vitals - at that point I didn't care.  They asked for my permission to have her transported to Kaiser for further evaluation I said yes.

On my way out of my classroom I called Windsor again...and asked what had happened...did she fall??  They said no that she had had no falls but as 911 got there she had another grand mal seizure.  She had only been there for 20 hours and already back at Kaiser.  I feel frustrated with Kaiser as well....why did they send her out if she was still so medically fragile??  Was it because her medi-care only allows 7 days of charges for their patients and my mom was reaching her 7 days??  I mentioned that to the administration dept. and they gave me a phone number I could call if I thought they were discharging my mom too soon.

I arrived at the ER at the same time as the ambulance - I saw them wheel her in.  The ER is good about getting the family in as soon as possible so I was led in quickly as the doctors had questions for me.  She was laying moving her legs a little and moving her arms...they asked my what I wanted them to do...should they intubate her??  I said yes so they could figure out what was going on BUT I told them that she did want "life support".  I have to tell you that I struggled with this so much...as they were not sure if my mom has sustained any kind of brain damage....and they fact that this time she was on "full" support from the ventilator (before she was the one initiating the breath) - it was now about 11 am and I was keeping it all together until the reality of all things hit me....the nurse in the ER told me that she would have done the same thing (put the tube in) - I just hoped that it was for all the right reasons.  Shirley got there shortly there after (she has such a calming, spiritual presence) and I was very relieved to have her with me - thank you Shirley.

They moved my mom up to ICU for the 3rd time in 3.5 weeks......still the vent was on full support and they were waiting for more tests.  The plan was to get a MRI of her brain to see if she had a tumor, clot or had had a stroke....it all came back negative.  So why did she have the seizure??  The neurologist came in a did a few tests on her...one of which was her reflexes - he said they were good, her eyes were reactive.  Now they were waiting for her to wake up more so they could do more tests to check her.  Before I left this evening she was a little awake....we tried to get her to follow commands and sometimes she did....the nurse said that we needed to let her wake up more....I asked my mom if she was cold and she nodded so I asked for some warm blankets and she went deeper asleep.  Now they are waiting to try and wean her off the tube again possibly tonight....I talked to Sadie about waiting until tomorrow as today had been quite a day..but they really want them off the tube asap.  I will call in a while to see how she is.

I really need to thank a group a people who made it possible for me to stay as long as I needed too....Elizabeth, Susan, Amy and Sandy, Leif, Sonia, Angela and Erika....you all rock...it takes a village.

Thank you for all your powerful prayers....my mom is being watched well.

Day 27

Day 1.5 at Windsor.....After leaving my mom yesterday with an uneasy feeling of unfinished business I arrived today just waiting to see how it all was...I don't have a lot of faith in SNF's (skilled nursing facility's).  SOOOOO I arrived about 9am and my mom was sitting in her wheelchair getting her oxygen numbers read....I watched it and the number was 84 normal is higher than 95...so I know that wasn't good...I also noticed that she did not have her oxygen tube in her nose...where is it???  I asked the CNA told me that she didn't know and thought that my mom didn't need it...so I went to the LVN in the hall and asked the same question...she said that the night nurse had told her that my mom took the Bi-PAP machine off....I reminded her that my question was about the oxygen tube...When the LVN came into my room she said that the CNA had just taken my mom's O2's and they were 90....I said "NO it was 84" so she stuck the thing on my mom's finger and it read 86.....still too low then she told me that doctors orders were to only wear it sometimes....I said "really...I don't think so, can you please double check?" I went with the nurse to look at the chart and sure enough the orders read......CONTINUOUS OXYGEN.....Ugh...what if I wasn't there?  It is so frustrating it makes me nervous to not be there.  Shirley is orchestrating visitors in the mornings so we all can keep an eye on things....I really do not like these places.

My mom's room mate told me that she got up this morning and went to the bathroom by herself...the roomie called to tell the nurse and they came in and told my mom not to get up alone.  But then we know she can walk without the help of a walker especially when she is well rested and has the most strength.  When my mom wanted to move from the chair to the bed....she would ring her bell ....no one came...so I helped her and she did good...didn't have to give her a lot of help just steady her.  She still has her "off" times in her thought process...I usually listen to her and correct her a little when I see that she is spinning in what she is trying to say.  She is watching a bit more tv and glancing at the newspaper and talking about the headlines.

Lis is still not eating a lot although more than she ever did before the 5th but still not much...I am thinking that I will bring her a jamma juice with protein just to get more in her.  She still would rather eat the fruit and not the protein....the physical therapist told her too to eat more protein so she can get more strength.  If anyone has good ideas to increase her protein in a tricky way please let me know.

The physical and occupational therapists came in today to do their assessments....my mom was very tired she had been hoping for a nap before they came....didn't happen.  So she told them that she was tired but they carried on anyways...they asked questions and my mom answered them, they took her down the hall to have her walk along the wall using the hand rails.....she did it really well and looked good but she tires and wants to sit down.  The therapist talked about that my mom was looked really good...I warned her that my mom would tell them she was too tired or that she wasn't ready...I told the therapist to not take no for an answer....she has to do the work if she wants to go home.  She talked a bit about that today that she wants to be home in her own stuff...I don't blame her...she gets so confused about her whereabouts and I was talking to someone else today and they said the same happened to her mother and when she got home all the confusion went away.  I hope that my mom will get to be home soon....I think she will....but they may mean I can only wonder.

If you would like to visit that would be great...the visiting hours are 8-8.  I asked when you are there remind my mom to drink water or whatever else is on her table and have her inhale on her incentive spirometer at least 5x.....thanks all...my mom will be back - thanks for all the well wishes it is greatly appreciated.

Day 26

Today I arrived at the hospital just in time to see the doctor on her rounds.  My mom was sitting in the chair  and she looked good, like herself just a little thiner.  She told me that she was tired because she was on danish time (that is her way of saying that her days and nights are mixed up)...she had to wear the Bi-PAP machine and really does not like it...she lasted 3 hours and then took it off.  The doctor asked her about that and she went into a long story....she did sound a bit confused and off topic although I could see that she was trying explain something that made perfect sense in her head but it came out discombobulated...the doctor tried to make sense of it.  The doctor talked about her moving since she was not in need of any acute care and that she really was pretty stable....but the doctor asked my mom if it would be ok to talk to me outside the door, my mom said sure.

Outside the doctor expressed her concern about my mom's confusion...I said I had worried a bit about it too as she has said some things to me that were interesting like she saw a man in a red sweater outside the door and she works for one of the nurses....she told me that she wanted to do a brain scan to see if maybe she had a stroke....I told her that a scan had been done of the 5th of April so she looked it up and read to me what it said...no sign of stroke just some narrowing of arteries brought on by smoking....the rest looked good.  It was decided to have a psych evaluation.  The doctor ordered it and he came within a few minutes.  He did is psychology protocol and left the room....he returned a while later to talk to me...he said that what my mom has is NOT dementia that she has a type of delirium brought on by the trauma she has been through and that it would go away with time.

I asked the doctor what she thought my mom's prognosis was and she said that she sees my mom getting better, I wanted to know if she thought my mom would be oxygen dependent and she said no.  The doctor didn't think that the Bi-PAP machine would make a huge difference in her Co2 status she thought that as my mom gets stronger and keeps her nutrition up that she could continue to get better but she must do her incentive spirometer every hour...inhaling to the count of 4   5-10x every hour - so please when you are visiting remind her to do it.

My mom has moved...she is at Windsor Elk Grove 9461 Batey Ave., Elk Grove, CA 95624 the phone number is (916)685-9525 - she does not have a phone in her room but they told me that they have cordless phones that they can bring to her if she gets a call.  I went with her there and everyone seems very nice...it felt very chaotic this afternoon and I had to leave before they got her truly settled but Leif and Christian were there and said that she is now in room 23B a nice window bed.  It will be interesting what the therapists decide her routine will be.  She is much stronger than when she got to Eskaton so I am hoping that she will be on-board with what they want her to do.  There are nice outside places to be so hopefully my mom will get wheeled outside...the sunshine will do her good.

Thank you everyone.......here's to a successful rehab....go Lis, mom, Oowa you can do it.

Day 25

So today was to be moving day....BUT it has been postponed until (possibly) tomorrow.  Her Co2 numbers are still at 60....the doctor told me that her body is "handling" the number because her Ph balance is where it should be (whatever that means).  She still gets confused a little bit....which is an affect of the oxygen levels.......sometimes I am not sure if she doesn't isn't trying to be funny - but when I question what she said she defends it as the truth, like today she told the nurse that she never had high blood pressure - she has had it for years.  Sometimes I just don't think she completely comprehends what is being said to her.  It is confusing because suddenly she talks about current events.

I asked the doctor about this Co2 thing would keep happening and she could not guarantee that it wouldn't but she believes that if my mom would wear the Bi-PAP machine at night she would have better days.  She didn't want to wear the mask last night and they had a heck of a time convincing her that she had to wear it.  According to my mom she wore it until 1am and then was tired of it.  She did admit that she feels better when she wears it.  She is totally better when she sits up in a chair...it seems to open up her lungs but today she was so tired she couldn't keep her eyes open so she was sleeping in her chair.

Her eating has gone down a little bit.  She is eating mostly the fruit again and I told her that she needs the protein as that was missing from her blood when she came in of the 5th.  We will see what happens.  I hope she keeps up.  She is still able to write...it is even surprising to her so her strength is definitely better then it has been.

My biggest concern is that she will get to this new SNF (skilled nursing facility) and get left in a bed and it will all start again.  SNF's run on "right to refusal" so she can say no to the mask and they will leave it off or she will take it off....hopefully it will all be alright.

I am hoping for visits again when she gets to the SNF so that the facility can see that my mom has a lot going on and they better be on their toes.

Day 24

Happy Easter everyone...hope you all had an enjoyable day.  Shirley started her day with my mom and was there for the doctor...great.  I wanted to know if they were going to move my mom or wait until Monday...they did not move her today because her Co2's were at 60 (they should be between 35-45) so no moving today.  The reason the numbers had climbed again is because she did not wear her machine - I am not totally convinced that the machine is going to change everything but we will see.

The doctor and Shirley talked very honestly with my mom about the consequences of not wearing it.  That this last episode would happen again or even worse.  They reminded her of what she told the surgeon  when she was being wheeled into the surgery....she told him that she had grand children and not to let her die.   My mom doesn't like the noise or the cool air that comes out of it.  She did say that it relaxed her a lot - and Shirley said that she fell fast asleep even though when I ask my mom she claims she got no sleep.  The nurse said that she had ear plugs to deal with the noise - problem solved.  Today she had to wear it 2x for 2 hours each to try to get her used to it before bed time.  I felt it and the air does come out quite forcefully and it is cool but it really isn't that noisy - kind of soothing white noise.  I got there about 1:15 and she had finished the first 2 hours, ate lunch and was getting ready for the next 2 hours, the nurse asked me to call when I was leaving and they would re-hook her up.  I left about 2:15 with a promise to be back after our Easter dinner with the kids.

I returned about 4:30 and hurried the brood up to the 4th floor to find a sign outside that we had to gown up.....WHAT? was I in the right room??  I was just here.  SO I asked the nurse what was going on and he said that one of my mom's lung cultures from the ER came back positive for bacterial pneumonia so they had to take precautions.  So the kids could wave but not come in....she had really been looking forward to seeing Michael but he didn't come in because he had a cough and cold and his asthma was acting up.  So they yelled hello to each other - we only stayed a few minutes.  I can not believe it 2 near death experiences and 2 bouts of pneumonia...bummer.

In the parking lot we ran into someone we know from Michael's school.  She was there with her mother in law....we got to talking about the skilled nursing homes and they also had a bad experience with Eskaton Greenhaven and she said that they would never go back there.  I am hoping that the trick is to show these places that this patients has lots of people watching out for them and they better be on their toes.  I know what to look out for but I am still nervous for her to be moved...but that is the next step and we all will just have to take it.

We shall see what tomorrow brings.  Happy Monday all

Day 23

Saturday.....arrived about 10am to a room full of people and my mom sitting on the side of the bed getting a back massage from Sonia, she had eaten her breakfast (well most of it) this is the first time I had seen her "really" eat since this all began.  The nurse told me that my mom had pulled her feeding tube out, she said that she didn't and swore that a doctor had taken it out but I knew that wasn't true...because the doctor had told me that she wanted my mom to have both to get all her blood counts back up to where it should be.  She looked really good...bright and clear...better then I remember in a long time.

She was supposed to wear the C-PAP machine for 3 hours last night...she made it only 1 hour.  The doctor was very disappointed and had a talk with her about the importance of wearing this.  The machine is used to push air into my moms lungs so she can get the bad air out, keeping her O2 and Co2 in check.  My mom hates noise when she sleeps, even though during the day her tv is on full blast, she dislikes a ticking clock.  So I had the nurse turn it on to see how loud it was...it is just a hummmmmm no big deal - I told her that has survived all the noises of the hospital for 3 weeks now - she should be able to handle this.  I also put it on her face and she started to inhale all crazy and exhale....I told her that she just needed to breathe normally and the mask would do the work.  I am not sure really gets it....so tonight I called the nurse and explained that I think she is not clear how to use it...he said that he would talk with respiratory therapy and have them go over it again.  My brother went there tonight and she was very tired and falling asleep so she kicked him out - he reminded her to wear the thing and she that she was not going to wear it....I sure hope they make her do it and teach her the way.

Shirley was there while I was and the physical therapist came in.  My mom seemed a bit confused at that time..asking the therapist if she was on vacation....why was this happening??  when she had been so clear yesterday....she came around after a little while and they took her o2 reading and it was low...as it came up she got a bit clearer.  The therapist got her on her feet and she walked a bit without a cane or walker....we could totally see that she was much stronger than she had been since 3/16 so that was good.  She sat herself back down very well and controlled.  The therapist thought that her left hand should be re-xrayed so that she could possible use it more...my mom has not complained about it hurting and she uses it a lot, so the doctor ordered it.

Tami the discharge coordinator came in to talk to me about where my mom should go after they let her go from Kaiser, maybe tomorrow or Monday.  That concerns me as I believe that this did all start before she left last time and I did not want the same thing to happen again.  I told Tami that and she called the doctor to come up and talk with us.  I am hoping that does not happen until Monday.  I will keep you posted.  I know that she is not going back to Eskaton at this time but I do believe that what happened at Eskaton can happen anywhere.  What I am hoping to keep up the visits so that the staff is aware that we are aware.  I really believe that people coming and going from my moms room will help to assure that she will get good care.  Also, I learned that I have to be more persistant when I know something is wrong.

Lunch came and she sat right down and started eating, the doctor was in the room at that time but that didn't stop her.  She ate more than half, she was able to open the packaging which she hadn't had the strength to do, also able to pick up the cups when they were full which she had not be able to do...good to see.  She said that she was full and she knew she wouldn't want dinner.  But when I talked to the nurse at 6pm my mom had said that she was waiting for her dinner because she was hungry - good news.

I hope she gets a good night sleep and that they get that C-PAP machine on her and she leaves it on..they are supposed to put it on at 10 so I may call to see if she did it.  My guess is that she will fight it and take it off when they leave the room.....

Well Happy Easter to all of you and thank you for all your well wishes.  Things continue to look up...let's hope we keep going in the right direction.

Day 22 part 2

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

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

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.

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

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.

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.