Friday, September 7, 2012

Service Details

Today, we picked up Angela's ashes.  Tomorrow is her memorial service, 2:30 at Red Bluff SDA Church.  Sunday, we plan to scatter her ashes from the Golden Gate bridge, and Monday we'll start home.  We have a friend who is doing an estate sale, starting today.  She had an amazing amount of stuff in her house.  We're staying tonight with another friend out of Redding.  It was sad, this morning, watching strangers leave with her stuff, but I told myself to remember that those people were being blessed by her even now.  This weekend will be hard, I'm sure, but the sorrow is for ourselves, missing her, and not for her, since she is waiting for Jesus and when we see her again she will be in perfect health, without any limitations.  May that day come soon!

Wednesday, August 29, 2012

Sleeping in Jesus

Angela passed away this morning.  There were just too many things going wrong for her to overcome.  It is comforting to know that the next time we see her, she will be in perfect health.  Praise God for that hope.

Monday, August 27, 2012

Challenges

Sabbath, Sunday, and today have not seen many lucid moments.  On Sabbath, Angela pulled her NG tube out.  She has been drinking quite well, including a smoothie that I make her each morning, packed with everything healthy I can think of, including wheat grass at her request.  Because of its strong flavor, I decided  yesterday to see if I could hide Lactulose in it today, and it worked.  She hadn't had any since she pulled the tube, and her ammonia level just about tripled.  If this doesn't continue to work, we're down to reinserting the NG tube, which I fear will require sedation and/or restraints, trying to get a stomach tube put in surgically, or just providing her with comfort care and letting nature take its course.  Placing the stomach tube will require someone (I'm not sure if it has to go to a judge or just be signed off by two physicians) to agree that she is incapable of making her own medical decisions as she told the doctor that she does not want one. She has also told me she doesn't want to die, but she is convinced that she doesn't need her medicines and/or someone is giving her the wrong ones.  One of the doctors she has seen for years came by today and said she's just got too many things going wrong, and he doesn't think she can pull out of it.  I understand but I'm not ready to stop fighting yet.  I'm not convinced that everything can't get balanced and give her a reasonable life for another while.  But it is hard fighting for her when that means fighting her.  This confusion is not fun to deal with.  I've stopped asking God to heal her and have started asking him to do what He knows best.  I only want her to have peace.  Some of her confusion has been anything but peaceful.  I'm so glad for the hope of the resurrection, when she will have a perfect body and mind, but if it is God's will, I'd like her around here a while longer first.  Mike is considering flying down for the long weekend.  It would be nice to have him here.

Friday, August 24, 2012

A Good Day

Today was the best day Angela has had since last Thursday.  She was mostly not confused, ate better, and worked hard at physical therapy.  I'm trying not to get too excited, as I try not to get too down when things don't go so well.  But I am thanking God for the progress she has made.  She is wanting the NG tube out, but is not convinced yet that it is in her best interest to take all her medications.  This, however, is not new.  So, for now at least, it will have to stay in place.  I hope we'll be able to have a happy Sabbath.  Her roommate went home today, so unless someone else moved in tonight we may have a "private" room, though I'm surely not counting on it.  We found last weekend that the Physical Therapy gym is a quiet place when no one is there (they close for Saturday and Sunday).

Wednesday, August 22, 2012

NG Tube

Yesterday, when I arrived, Angela was herself, for the first time in several days.  But it didn't last long, and she refused her Lactulose.  After a battle of about an hour, I only was able to get half of it down her.  We tried the Geodon again since the last time it made her take the Lactulose, but this time it didn't have that effect.  I really don't want to do that any more, especially since it isn't working.  This morning, she was still very confused, but she did eat a good breakfast.  But, she still continued to refuse her meds.  The dietitian told me again yesterday, and I think this time it stuck, that she needs more protein for healing, but without the Lactulose dietary protein turns into ammonia.  So I consented to a feeding tube this morning.  They will also start the 2-3 day process of getting her a PEG tube, for feeding and meds directly into her stomach.  It takes that long for scheduling and evaluation, I am told.
I continue to be amazed at the way our bodies, when they are healthy, balance everything so easily because when someone loses that balance it is so difficult to regain it, and so many factors that need to go into that process.
We also found out yesterday that her UTI is VRE (Vancomycin-Resistant Enterococci), and the best antibiotic is one she is allergic to.  So, that is also undoubtedly contributing to her confusion.  They are using another one I'm hopeful will work.
We are blessed to have a competent and compassionate team with many specialties to guide in her care.  I continue to believe that this is a bump in the road and not the end of the road, and I am hopeful that getting her appropriate nutrition and medication will get her over it.
Of course, she continues to be in God's hands, and there is no better place.

Saturday, August 18, 2012

Some "down" days

After Thursday's wonderful day, Angela spent Friday and today in a confused mental state.  This morning, she was so out of it that she only drank part of a protein shake for breakfast and I had difficulty getting her Lactulose down her.  She has also developed a urinary tract infection, and one thing caused by that is confusion.  I think that's #5 of things attacking her brain.  Anyway it's being treated and apparently responding.  Her ammonia level was high again.  Her CO2 retention does not appear to be the primary issue at this time, so I'm hoping that with a few more doses of Lactulose her confusion will abate.  We shall soon see.  At any rate, it appears that Lactulose will be a big part of her life from now on.  She had a couple of visits from her friend - Friday night she seemed to be calmed and cheered, but today she didn't pay as much attention and didn't even sing along with her friend much.  She spent most of the day in her wheelchair, using her arms to move herself around the corridors - excellent exercise, I believe.  I hope she sleeps well tonight.  She hasn't been, saying she is afraid to go to sleep.  In her confusion, she thinks someone is swapping her meals with someone else and giving her medicines she shouldn't be taking, so it's been a challenge to get her to eat and take her meds, but God is good, and so far she is doing at least an adequate job of both.

Friday, August 17, 2012

A Wonderful Day

Wednesday wasn't a good day at all.  Angela spent nearly the entire day confused and the doctor was asking us to think about a plan - should we put her on a ventilator, etc.
But Thursday was a complete turnaround.  She spent the entire day lucid, walked (with assistance) a couple of times, did exercises at PT, played games, showered, started a new breathing therapy that seemed helpful, and met a dietitian who has expertise at using foods to complement medicines and their side effects.
I really don't like this roller coaster, but it is comforting to know she's in God's hands, and I do feel blessed with a day like yesterday.  We'll see what this new day holds.

Wednesday, August 15, 2012

To the Rehab Hospital

Yesterday afternoon Angela was transferred to the rehab hospital - one step closer to coming home.  She still cannot stay off the BiPAP for more than 2-3 hours, and the settings that are needed are causing more pressure than she is comfortable with, but I think she's making progress.  She is walking with assistance quite well, and farther each time.
Her doctor, though, does not expect her to do well.  He says her liver is getting worse and doesn't know how long it can last.  However, we have been told similar things in the past, and I think she could have more life - and quality life - ahead of her.  At any rate, she is in God's hands, as always, and trusts in Him.  She is finding joy in singing scripture songs.

Monday, August 13, 2012

More Ups and Downs

Angela continues to get stronger.  She is walking with Physical Therapy further each time.  But, she is still having episodes of confusion.  Her ammonia level has risen a bit.  The doctors have informed me that it is not the ammonia that causes the confusion - it is something else that hasn't been really identified, but which seems to go up and down along with the ammonia, at least somewhat.  I continue to be amazed at the complexity of our bodies and how we don't notice all that is going on, as long is everything is working right.

So, they will give her some Lactulose along with treating her lungs.  It may or may not make a difference.

Tonight, she is supposed to try sleeping using her home BiPAP while being monitored and then have arterial blood gases drawn in the morning to see if it is adequate to keep them OK.  Her BiPAP masks - she has two so she can alternate - weren't fitting her right this afternoon and she was getting frustrated, as well as starting a small sore on her nose.  I hope she can calm her frustration enough to allow the respiratory therapist to put one of the masks on her.  Sometimes it works better when I'm not there.  She hasn't been sleeping well because of the monitors in her room.  Something is always alarming, and she gets frightened and can't sleep.  I asked the nurse to try to turn the alarming off for her room, but she wasn't sure that was possible.  She is in a unit where someone in another room down the hall is always watching her, and the rest of the patient's, values, and I can't see the reason why the alarms need to be so loud in her room to wake her up, but we'll see what they were to arrange.  I expect she will be released in a few days and hope we'll be able to handle whatever comes up at home.

We continue to thank God for the recovery she has had and to pray that it will continue.

Thursday, August 9, 2012

Improving

After spending 1 night in St. Elizabeth's ICU in Red Bluff, Angela's doctor asked me if I'd like her transferred to a lung specialist in Redding, so we've now spent 2 nights at Shasta Regional Medical Center in the CICU. Yesterday, she was back to being herself mentally and sat up in a chair without the BiPAP for six hours, feeling great.  But, it was too much, too soon.  In the evening, she became confused again, and blood gases were bad again.  She went back on her BiPAP and by this morning is again back to herself.  Today, they plan to transfer her out of the ICU and keep track of her labs, maybe keeping her on BiPAP a bit more.  She gets tired of having the mask on all the time, but it seems to be what is keeping her lungs on track.  She may have another sleep study before she goes home, to be sure her equipment is set right.  She does seem to be headed in the right direction, but things need a bit more tweaking before we're ready to tackle being home, without all the monitors and fancy equipment.  We are thankful to be indoors here, where a jacket is comfortable, when outside it is in the triple digits.  God has certainly blessed us and we are grateful to have the Angela we know and love back from wherever a mind goes when its environment is not providing the right support..

Monday, August 6, 2012

Back to the Hospital

This morning, Angela's oxygen saturation rates dropped to the low 60's (They should usually be around 90), and I couldn't get them up even with BiPAP and increasing her oxygen flow to the concentrator's maximum, so I called 911.  She ended up being admitted to the ICU, but is holding her own and seems comfortable.  They will retest her arterial blood gases in the morning - they were pretty bad today - and see where we go from here.  Apparently her lungs aren't happy with her total lack of moving the past two weeks.  They have a lot of crackles, like she needs to cough, and some degree of collapse but apparently no pneumonia.  The BiPAP helps with the oxygen and  CO2, but she can't cough effectively while wearing it. Most of the time she is peaceful, and was even singing a little, but sometimes she seems troubled about not completing what she was given to do, which seems to me something like saving the world.  I try to reassure her, and I think she is hearing me.  Her mental state is still very changeable - sometimes she is her usual self, but more often she is somewhere else.  Sometimes she will answer questions, sometimes she ignores them.  I pray that God will keep His arms around her and give her peace, as well as healing if it is His will.  A friend posted a Bible verse on Facebook today that I really like.  Deut 31:8.  It says: "The Lord himself will go ahead of you. He will be with you. He will never leave you. He'll never desert you. So don't be afraid. Don't lose hope." 

Sunday, August 5, 2012

A Happy Sabbath

On Friday, Angela didn't eat or drink much of anything and took about half of her Lactulose.  I was really getting concerned that she would dehydrate herself.  But today she ate two good meals, drank some water, and took all her meds.  She is still telling me that she is allergic to water and has rabies, but not all of the time.  Her friend came to see her today and sang some songs with her, and she seemed to really enjoy that.  She also got up twice, with lots of help, to go to the bathroom.  So, all in all, we had a happy Sabbath.  God is good.

Thursday, August 2, 2012

Home

We almost literally got kicked out of the hospital today.  According to the doctor, they weren't doing anything we couldn't do at home, but the supported living providers Angela has are not allowed to give her insulin, and she may not be able to give it to herself some of the time.  I am allowed to give it to her, so we ended up coming home with that plan for the short term.  Long-term, we'll have to figure out later.  The issue is still how to get her to take the Lactulose when she isn't thinking right, and in the second place, get food down her (can you believe I'm writing that?).  She wasn't lucid very much today, mostly rambling, but twice she was just aware enough to take her Lactulose and eat.  I believe in order for her to recover she will need to do at least this, so the day has ended well.  She's sleeping, and I'm praying that she will continue to take this med until it can do its job and clear out the ammonia.

I'm also being forced to consider whether or not I will ask the doctors to use a feeding tube - through the nose - to force her to take the med and food if she is unable to cooperate.  Her doctor is not optimistic about her recovery, but she doesn't know Angela well.  While I know that her liver failing is likely at some point, I'm not ready to give up on her yet.  Still, I don't want to put her through the painful procedure of inserting the tube and probably uncomfortable feeling of having it there only to prolong her life if that won't return any quality to it.  I pray that if that decision needs to be made, Mike and I will have the wisdom to do it correctly.

Wednesday, August 1, 2012

Psych Meds or Not

This morning, Angela talked nearly nonstop, all rambling, but she was, at least for the most part, not agitated.       She was also refusing all medications and all food.  Her doctor wanted to give her some psych meds.  These scare me, and even those trying to get me to consent couldn't say with any confidence that they would help her.  They were considering two - Geodon and Invega.  Geodon has the advantage of being able to be given in a shot, so Angela wouldn't have to do anything.  However, it is metabolized through the liver - not a plus.  Invega is not metabolized through the liver, but it is a time release oral pill, so Angela has to voluntarily swallow it.  Early in the afternoon, I consented to the Geodon in an effort to get her to take the Lactulose, which still seems the only avenue to recovery for her.  And it worked.  Twenty minutes after the shot, she was conversing normally, agreeing to take her meds, and eating a little lunch.  Then she fell asleep, which was expected.  However, she only slept three hours and then resumed her rambling.  The plan is for them to repeat this 12 hours later, around 2 am, and if possible give her one of the Invega tablets.  They only have to be taken every 24 hours, and the hope is that they will keep her amenable to taking the Lactulose until it can bring down her ammonia levels and she can think straight.

Her doctor wants to release her tomorrow, saying that they can't do anything for her at the hospital that can't be done at home.  They have also offered a nursing home as an alternative.  I can't imagine sending her to a nursing home to be ignored!  I made arrangements with the social worker to have in place what she will need at home.

Then, in the evening, Debbie--the owner of the company that provides her supported living services--came to visit and said she did not feel Angela was ready to go home.  I had previously told her doctor I would feel much more comfortable if she stayed in the hospital until it could be figured out just which psych meds would be beneficial and the appropriate amounts.  The doctor said that could be done at home.  Anyway, Debbie is going to go to bat for us tomorrow morning in an effort to stay in the hospital a little longer.  We are blessed because she has fought this kind of battle before and knows who to enlist and what steps to take.

We continue to pray for peace for Angela and wisdom to make some very difficult decisions and are so thankful for all those who are praying with us.

Tuesday, July 31, 2012

A Roller-Coaster Day

The first thing this morning, Angela was being combative to the point of needing restraints.  Her doctor saw that and ordered a psych consult.  She had no interest in breakfast or morning medications.  But by lunch, she was ready to eat some fruit and a protein shake, and by dinnertime she was her old self, mentally, eating a good meal and taking her Lactulose, the only way - to my understanding - that the extra ammonia can be cleared from her system.  She got a shower this evening, even though her mental state had reverted a bit, and with a lot of coaxing took another Lactulose dose.  She was sleeping when I left.  If she will let them, they will draw blood around 4:00 tomorrow morning to check how the ammonia is doing.  It is great that her caregivers are there with her, too.  Overall, I would say that today was a small step in the right direction.  I thank God and pray that this trend will continue, if it is His plan for her.

Two Good Years

I note that the last entry here was over two years ago.  Angela has been quite healthy during this time.  Her liver has not returned to normal and, in fact, she has been jaundiced to one degree or another and has continued to have elevated liver enzymes during this time, but she has been able to do the things that make life good for her.

In the last few months, she has started retaining more fluid and, as always, has been very resistant to increasing her diuretics.  But she was well enough to visit us about a month ago for our family reunion and celebration of Mom & Dad's 60th anniversary.  She thoroughly enjoyed seeing everyone and we all enjoyed her.  She did appear more frail than before, but was able to walk a little and play croquet.

Last week, she went to the ER for hip pain, but they looked at how much edema she had and focused mainly on that.  She was admitted and some tests were done.  Friday morning she told the doctor that she wanted to go home instead of to a nursing home as had been recommended, so she was released home.  By that evening, she was becoming irrational, with very strange behavior, some of it outside, obvious to neighbors.  Her caregivers took the necessary steps to have her readmitted to the hospital, and she has not been herself since then.  Her brain is being attacked by her deteriorating liver, primarily by the increasing ammonia concentration in her blood which prevents her from thinking rationally.  She was also given an anti-anxiety drug, Ativan, which gives her a bad reaction.   Then, yesterday, she stopped responding at all and looked like she was trying to bite her tongue off.  Some of the nursing staff thought she might be having a seizure, but it turned out to be a high CO2 concentration in her blood.  She has had this before, and it usually clears up with the use of a BiPAP machine, and she was immediately placed on that. By this morning, she was talking a lot.  Unfortunately, if you listened to more than four or five words, you would realize that they made no sense.  She spent her day between this state and sleeping.

This afternoon, we were finally able to see her primary-care doctor instead of the on-call physician.  She said that Angela's liver has really gone downhill and her heart has enlarged even more.  She said that Angela may recover from this episode, but does not have a good long-term prognosis and as her liver fails, her mental status probably will very from good to bad.

I see two possible scenarios:
1)  Her liver is failing.  There is really nothing that can prevent this; slowing it down is the best we can hope for, or
2)  Her BiPAP mask has not been fitting and worn properly, causing her to have less oxygen in her blood than she should have.  This causes stress on her heart, which then enlarges, and on her liver.

If it is #1, there isn't much that can be done.  If it is #2, we can make sure her equipment is working properly and hope that this will lessen the strain on her heart and liver, allowing some degree of healing.  In either case, she is taking at the hospital, and will continue when she is released, a medicine, Lactulose, which removes the ammonia from her blood and gets it into the digestive tract for elimination.

I don't plan to update this blog daily but will post whenever there is any major change.  Mike flies home Wednesday, but I plan to stay as long as necessary.  Again, thank you each for your prayers.