Saturday, April 14, 2012

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

Friday, April 13, 2012

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.

Thursday, April 12, 2012

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.

Wednesday, April 11, 2012

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.

Tuesday, April 10, 2012

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.

Monday, April 9, 2012

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.

Sunday, April 8, 2012

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