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.
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.
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. How does one grind a tablet if one doesn't have a mortar and pestle? I used our garlic press.
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. Another missionary nurse, Dorothee came over and recommended alternating warm and cold packs on her sores to get the blood flowing better to speed healing. She also left some special pillows to keep Amy positioned as best we can. Thanks, Rachel & Dorothee!
This afternoon, the Wade's came over and watched Amy and sent us out for lunch at Chili's and a movie (the Jungle Book). It is the first time we've gone out to eat in over two months. It was a great time to be out together as a family. Thanks, Wades!
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.
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). She seemed apologetic today and I felt bad that she couldn't even apologize, but I told her I forgave her and knew she wouldn't have hit me if she had known it was me.
This morning I had to walk out of our team meeting when they were singing because they sang 10,000 Reasons and the last verse says:
When my strength is failing
The end draws near
And my time has come
Still my soul will
Sing Your praise unending
Ten thousand years
And then forevermore”
And I just couldn’t take it.
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.
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.
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.