April 2016: "The Georges in Peru"

Okay, not smoking, but Amy did drink a lot more liquids today and ate 2 bites of icecream.  She had company today (two women came and sat and chatted with Sarah in Amy's room), which I think makes her happy.  She seemed to smile at different things that they said.  Last night I slept next to her.  Her arm is so weak that I'm no longer at risk of getting hit by a wayward arm during the night.  I slept pretty well until 3 or 4 am, but then her irregular breathing kept me awake.  I think I'll go back to my mattress on the floor tonight.

Amy drank very little today.  Attempts to give her water were met with lots of gurgling and coughing because she can't swallow very well.  Not surprisingly, since she can't eat or drink she's lost a lot of weight (over 20kg)  She only weighs 42.7 kg (94 pounds) now.  To keep bedsores from forming, we try to change her position every couple of hours and move her legs and arms because she seems to get stiff.  The nystatin drops solved the thrush problem in her mouth, so that is a very good thing.  Alas, we'll take whatever good we can get.

Amy has always loved baths and it is about the only thing garanteed to bring a smile to her face.  I suspect having lost so much weight she always feels cold, so a warm bath is nice.   Also, the weightlessness is good for getting the pressure off of bedsores.  Getting to the tub is hard for her however.  I think she is pretty stiff from lying in bed all day and picking her up to put her in the bath is like trying to stand up after bending over for too long.

That is the question I have everytime I look at Amy, whether I am sitting beside her or coming back into our room.  Most of the time I have to wait quite a while for the answer to my question since she takes big pauses in her breathing.  Today she's been pretty out of it, but did manage to eat two tiny spoonfuls of icecream and drink a fair amount of water (300ml).  She seems a bit more agitated so I ground up some of her pain pills and dumped the powder in her mouth and chased it down with some water.

Amy's clearest speech is when she is affronted with some negative stimulus.  Attempts to move her are invariably met with, "Ow, that hurts!"  This morning when I gave her ground up hydrocodone tablets, she grimaced and said, "Ugh!  Those taste nasty!"  Other than that, she's slept most of the day.  Pray that her pressure ulcers heal up or at least don't hurt.

Last night, Rachel, a fellow missionary (and nurse) watched Amy while I directed our chess club we have for neighborhood kids.  She gave us good advice for positioning Amy to help her bedsores stop advancing and she also pointed out that we could get her some antifungal solution for her mouth.  Amy has a case of thrush because of the steroids she's been on and because she can't swallow adequately.  This morning Sarah and I went for a run with a purpose:  We ran to the pharmacy about 1.5 miles away to get nystatin liquid to put in Amy's mouth, which she tolerated well.

During Amy's bath I was massaging her feet and she cried out, "Ow that hurts!" quite clearly.  Her right heel was red and tender and looking like a bedsore is trying form.  Seemed odd to us, since she can still move her right leg a little bit and it had a cushy sock on and there is so little weight on her heel.  But we put her on her left side and she is sleeping very calmly.  Her heart rate is under 100 for the first time in a week (which I attribute to all the fluid she took yesterday).  So, mostly a good day at the moment.

Amy is doing about the same as yesterday.  Still not eating, but getting a little fluid in via a sippy cup.  

My computer is slowly being restored.  Everything seems to be recoverable, it's just a slow process to download it all.  

Thanks for all of your encouraging emails.  Sorry I don't respond to all of them.  I do get them and appreciate them.

Time to help Mia study physics.

 Last night was kind of a sad one.  Mia and Sarah were helping me take Amy to the bathtub and she suddenly got scared and started punching me with her right arm (the only thing she can move).  “Mom!  That’s Dad you are hitting!” (don't worry, she can't hit very hard)  It was sad on so many levels, partly for Sarah and Mia to see their mom deteriorate so much that she’d not realize that she was hitting their dad, and Amy being so scared because she is so helpless (can’t see, or walk).

Today, I attempted to upgrade the operating system on my laptop and it crashed mid-upgrade and stopped functioning.  I ended up having to erase the hard drive and reload everything from remote backup, which means it will be a few days before everything is restored.

Amy is more alert today, despite hardly drinking and not eating.  She's talking better than she has for a day or two.