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.

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.

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..

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." 

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.

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.

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.