Nov 14 Status

Thursday, November 14, 2013

Didn't provide an update yesterday since everything seems to be pretty much the same.  She has received visits from the hospice nurse and now the aide has come and set up sessions for bout 3 times per week to bathe her, etc.

The director of spiritual care is scheduled to come tomorrow to meet both of us and of course the social worker will be coming also.

I think I will only start posting a status if something changes now since she is pretty much in a routine.  Still losing her thoughts, etc., but I do manage to get her to respond to certain things at times.  She is eating great now.

Love,
Ray

Nov 11 Status

Monday, November 11, 2013

She had a pretty restful day today - no real pain or discomfort.  It appears that she likes home-cooked food since she is eating everything I put in front of her.  Nice to see her appetite back.

All three kids managed to stop by today for a visit which was nice.

Now to get into a new routine for all of us.  Have to get things done when I can.

The nurse should be back again Tuesday, but her vitals, etc. have been looking pretty good, less a lower than normal blood pressure.

Love,
Ray

Nov 10 Status

Sunday, November 10, 2013

Barb had a good night's sleep last night.  Nicole stayed with her while I slept upstairs.  She awoke this morning to the dog giving her attention and Barb appreciated it.  She eat all her breakfast this morning, most of her lunch, and all of her dinner this evening.  I guess my cooking was missed.

The hospice nurse came this morning and gave her an evaluation and set up a plan for us.  More to come on Tuesday when her regular attendant get here.  The nurse liked the arrangement we have for her.

She spent several hours today sitting in the lounge chair and was alert most of the time.  Of course she spent a lot of time in her new bed resting.  For the most part, she was quite responsive and aware today.

While the girls were here with her I managed to get some shopping in so I can give her some home cooked meals (the pantry was low).

Now we all have to get in the right routine to make sure we don't surprise Barb with something new.

Love,
Ray

Nov 9 Status

Saturday, November 9, 2013

Around noon today Barb was released from the hospital,.  She has been resting peacefully here at home.  We did get her to eat about 1/2 of a sandwich and a cup of pudding - Every little bit helps.  She has been quite alert since we got home and sat up in a chair for a couple of hours before going back into the bed.

I have to get on the same pain med schedule that they had in the hospital because Barb tells us too late when she is hurting - it takes a while for the meds to kick in.

Just did a nebulizer treatment on her and now she is watching NCIS on tv.  She looks comfortable.

The hospice folks will be here in the morning to set up their routine.  I hope Barb has a restful night.

Love,
Ray

Nov 8 Status

Friday, November 8, 2013

The results of the spinal fluid test came back negative.  That ruled out numerous things that would cause Barb's disorientation and confusion.  The diagnosis is that this is a result of the brain radiation that she had last year.  It takes anywhere from one to two years for this to occur.  There is no way to rectify this.

Since they put her on an appetite enhancer she has been eating somewhat better.  She is no longer taking any antibiotics or steroids.  The only meds she is on is for her appetite and pain.  All IVs are out so she is no longer fighting those.

She is scheduled to go home sometime tomorrow and is now in an in-home hospice care.  I have a hospital bed all set up for her, along with her oxygen concentrator, nebulizer, and related equipment.  We won't set up a schedule with the hospice nurses until she actually get home.

This afternoon Eric has been busy putting in a ramp coming up to the deck.  He did a great job and it's really appreciated.

We have a dog that is anxiously awaiting Mom to get back home.

Of course everything is set up downstairs as she can't manage any stairs.  I have set up the couch as my bed to be close to her.

Throughout this entire ordeal, I could not have asked for better support from the kids and the thoughts and prayers from all of you.  Family and Christ are the only comfort.

As always, Love,
Ray

Nov 7 Status

Thursday, November 7, 2013

Thank God for caring and loving children.  They have been great.  Someone is with Barb all day and night.  They are even giving me the nights off.  It has been a blessing to get some "meaningful" sleep even with my mind racing.

Barb spent a good portion of today sleeping as she didn't sleep much last night.  More IV pulling and new lines set.  Someone has to keep an eye on her hands pretty much all the time.  The nurses have tried big boxing-style gloves and arm coverings, but she manages to "break the code" and get them off.

Still don't have the results of the spinal tests, but her ammonia levels are normal.  She hasn't eaten much since last Friday and they are giving her medication to increase her appetite.  It must be working since for dinner tonight she ate a small chicken strip, most of her potato wedges, the entire piece of Boston cream pie, and her entire Ensure.  They are now supplementing her meals with Ensure.

They still have her on antibiotics and pain meds, but have taken her off morphine and now is just on percocet.  It appears the morphine just increases her disorientation and all.

No decision yet as to her release.  We are meeting with the Hospice director tomorrow morning to evaluate if she is a candidate for in-patient Hospice care or home Hospice.  Many of you know how she had taken over the dining room table as a "craft" table.  I am now clearing off all that "stuff" so I can take the table down and make room for a hospital bed in case she returns home for care.  I thought I would plan ahead pending her release conditions.

Please continue to keep her in your thoughts and prayers and ask the Lord to provide the best solution to her condition as we know He will.

Love,
Ray

Nov 6 Status

Wednesday, November 6, 2013

Another exhausting day.  The didn't do Barb's spinal until about noon today and she had to rest flat for a couple hours after the procedure.  Long time for her.

She managed to pull another IV line out today.  They are having a hard time finding a place to start new ones.  She has been very aggressive today and has been fighting just about anything we have been doing.  Eric spent the day with us with Stacey coming in after work.  Nicole will be spending the night with her again as she did last night.

Eric and I managed to get a meeting set up with the head of the county hospice for us to get some info from her.  We are still looking at our options once she is released.  Right now the recommendations we are looking at are hospice (both inpatient and home care) and nursing homes.

We probably won't get the spinal results until at least tomorrow if not Friday.  Once they are reviewed by all the doctors, they will give us a "final" recommendation for care. There are still many things to be weighed pending a formal prognosis.

Driving us all nuts now that nursing home, etc. are becoming a reality.

As the Lutheran Service Book states "Our Help Is In The Name Of The Lord'.  Our trust lies with Christ.

Love,

Ray

Nov 5 Status

Tuesday, November 5, 2013

Today had its ups and down.  She would do great for a while, then all of a sudden become lost again.

The MRI she had done last night showed no new signs of activity so that put us on another path of diagnosis.

Now she had a neurologist check her out and he has ordered an EEG to check her brain patterns and a spinal tap to check her spinal fluid for signs.  Not sure yet when they will conduct the tests (probably later tonight).

They are also going to check her ammonia levels as this tends to follow the on again/off again pattern of her thinking.  Physical therapy folks are also going to try to work with her tonight to see if she can get around.

The big plan right now is for her pulmonologist,  neurologist. oncologist, and attending physician to get together tomorrow and see if it would be best and safe to send her home, or stop chemo treatments and put her in hospice.

Will have to wait more to find out the game plan.  The waiting game is never ending.

Thanks for all your best wishes and offers for help, but we are playing it one day at a time right now.

Love,

Ray

Nov 4 Status

Monday, November 4, 2013

Not too much has changed since yesterday.  Barb did have several hours of meaning dialog, but that came and went.  Her appetite has been good and some of the "fighting" has stopped (we found distractions to keep her hands busy).

Her oncologist ordered a brain MRI to see if there is any new activity of growth there.  When I left the hospital last night they we just wheeling her out to the lab.  We have already been talking with the case manager about home care.  They are looking into home health nurses coming in a couple of times a week for vitals, rehab, etc., and are looking into the county senior care which comes in to bathe her and stuff like that.  Nothing has been finalized yet though since her condition is still shaky.

I wish I had more to tell you guys, but anyone who has been in the hospital before knows - it's hurry up and wait and we'll tell you what's going on later.

God's blessings to all of you for your prayers and support.

Love,

Ray

Nov 3 Status

Sunday, November 3, 2013

I meant to call all of you today, but needless to say things got hectic and now I am exhausted.

Barb has been having trouble for the last week.  She has been experiencing a swollen left leg and foot for about three weeks now.  She has had several dopplers to see if it was being caused by a blood clot, but not clot is being shown.

She has been sleeping downstairs on the couch for the past week, with me in one of the loungers.  During the night she gets up and ends up on the kitchen floor, but was not harming herself.  Even during the day she has lost orientation.  Besides turning off the breaker for the stove so she doesn't start a fire, Nicole noticed she was putting her hand in the garbage disposal.  Now I have that breaker off also.

Her recent bout started yesterday (Sat) with me finding her on the floor of the kitchen.

This morning I woke up before she was moving and decided to shave and shower before she got going.  When I returned downstairs I found her in the kitchen on the floor unresponsive.

After her gaining some of her facilities I cleaned her up and tried to get her back to the couch, but she could only move a couple of feet and was stuck on the floor again.  I checked her oxygen level and it was 74 which is critical.  I called the EMTs and they transported her to the hospital.

After about 5 hours in the ER they managed to get her stable.  They did run another doppler and it was normal.  They also did a CT of her abdomen and lungs.  She has fluid on her left lung again and the scan also show that the cancer had spread to her abdomenal wall, spine, and pelvis.  Her breathing remained rather sporadic.  

She was admitted after they stabilized her.  After several hours she became more coherent, they after a while she became aggressive again and began pulling IV lines and anything else she could pull out or rip off.  She gloved her hands to see if that would prevent her from pulling things out, but she managed to remove them with her mouth.  Now her IV, etc. are wrapped to see how that works.

When I left the hospital a little bit ago she was going to sleep.  Hopefully that will help keep things where they belong.

Since I hadn't had much sleep this week, Stacey is staying with her tonight.

Will let everyone know how she is doing tomorrow.

Please keep her in your thoughts and prayers.

Love,

Ray