April 2016: "The Georges in Peru"

I've felt plenty of helplessness since November when Amy's MRI showed her brain tumor had returned.  But my feelings of helplessness have gone up another notch in the last few days.  Amy has gotten so weak that she can only speak in a slurred whisper, so we can't even understand what she wants.  Basically, anytime she tries to speak, I give her a drink from her sippy cup.  It's about the only thing I can do now.   We try hard to interpret what she is saying, but usually we can't understand her, which is frustrating for all parties.

Amy didn't eat anything today.  She drank about 700 ml of water (1 teaspoon at a time), but didn't have any urine output.  Her heart keeps going at about 135-140 beats per minute, yet she is fairly calm as she lies in bed, which is amazing to me, since I have to run pretty hard to get my heart rate up that high.  It's been beating like that for over 24 hours now.  

The kids have all been super at helping take care of her and helping around the house.  Today they repainted most of the kitchen!

Today Amy has been markedly calmer.  Her heart rate has gone down to the 120s.  This morning she even requested a bath, the first rational and understandable thing she's said in the last 2 days.  I'm not sure if she is shouting less because she is having difficulty talking, or because she is more comfortable, but it is a nice thing.  She looks more comfortable than she has been in weeks.  She is whispering a lot when she tries to talk.   Weight is down to 47.1kg. 

Today Amy didn't drink much and only ate two bites of food.  She just couldn't seem to coax her throat to swallow today.  At 9 pm tonight, she is breathing at 42 respirations per minute and her heart rate is about 130.  She's agitated and not speaking, though she was jabbering a lot earlier today, even just 2 hours ago.  The worst is, she seems like she wants something but can't communicate what it is.

Today Amy ate a bit more today and drank nearly a liter of water and tea.  She was a bit more understandable and lucid tonight, but then suddenly has become verbally unresponsive and is snoring comfortably in bed.  She requested a lot of different foods today:  grapes, potatoes, corn chips, granola, icecream, raisin bread, cheese, etc.  However, granola is the only thing that she'll eat more than 2 bites.  She's hard to feed, since she can't swallow well.

Today, my devotional time was on Deuteronomy 4. (I'm going through Numbers and Deuteronomy right now)  Verses 9 and 10 say, "Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them slip from your heart as long as you live.  Teach them to your children and to their children after them."  I think one of the most encouraging things that people have written me that they are praying for is for our kids to not lose their faith through this time.  This isn't an easy thing to explain to the kids.

Today Amy woke up a bit more conversant than usual, but still quite confused most of the time and her speech is so slurred she is hard to understand.  She even commented on her own speech.  "I sound like a frog!"  

It is getting hard for Amy to stand at all, even for just a few seconds at a time, which is complicating taking care of her.  You can imagine the difficulties that causes.  She's not eating much and her lucid moments are pretty uncommon.  Sarah came to the conclusion that she doesn't want to be a hospice nurse and announced it publicly.  On the positive side of things, I had the best night's sleep in a week, on a mattress on the floor next to our bed.

Amy hasn't been able to eat at the dinner table for a couple of days, but since she was doing a bit better yesterday afternoon, we decided to have her try sitting at the table with the family again.  It didn't work:  She kept reaching for things (she can't see hardly anything), dragging her hands through her food and would have knocked many things on the floor if it were not for Mia's cat-like reflexes.  So it looks like were done with sitting at the table unless she rebounds markedly.

I'm glad to report that last night was markedly better than the previous.  Amy slept, or at least was quiet, for most of the night.  She woke up at 3 am and said, "I want granola with yogurt!"  Yes, my home-made granola is that good.  You want to get up at 3 am to eat the stuff!  I trundled downstairs and prepared a bowl and brought it upstairs half expecting her to say, "I don't want granola now," but she ate the whole bowl full and then went back to sleep!