Amy's memorial service in Omaha will be on Saturday, May 14th at 11 am at Christ Community Church (404 S. 108th Ave).
With a heavy heart I must make this post, this afternoon at 3:45 pm, Amy went to heaven.
The funeral will be Saturday at 11 am at Enfoque Familiar near our home.
Visitors will be received tomorrow from 10 am until 5 pm at our home.
Thanks for your prayers,
Allen and the kids
Since yesterday afternoon Amy has been doing poorly. Her O2Sats are around 70 right now (for non-medical people that tells how well her hemoglobin is carrying oxygen and 70 is terrible, even at our altitude) and she can't swallow and is really gurgly when she breathes. I skipped the team meeting today to stay with her.
Ice cream, especially the type I make, is extremely calorie-dense. I once weighed more than I wanted to weigh and weighed myself daily and plotted my weights on the fridge door as a reminder. I didn't allow myself to eat icecream as long as I was over 170 pounds. It was a great motivator for me, and it worked to get the pounds off. But it is a great way to put the pounds on too, and today Amy actually ate a small bowl of icecream after her bath. Initially, I brought her just a couple of bites, since I thought she probably wouldn't eat it, but after she finished it I asked, "Would you like some more ice cream?" and she clearly replied, "I would!" But since then, she's been pretty non-responsive. It's amazing she can go up and down so much.
I've finally found the perfect way to give her something to drink. A bike water bottle! Mine has graduations on the side to measure how much I give her and I can squirt water into her mouth without it running down the side of her face. After struggling with sippy cups (too slow) and bottles (too difficult to control) it really is perfect.
Since Amy can't move, she's susceptible to bed sores (the pressure of one's own body weight can reduce the circulation so much that it damages the skin, especially over pointier parts of the body). About a week ago, I mentioned here in my blog that her right heel was hurting and it was the beginnings of a bed sore. We quickly kept the pressure off of it and it heeled [ahem] up (which makes one wonder how it could heal with the almost complete lack of nutrition since she can't eat) but other sores have formed. Most are like the heel was and are just red tender areas, but one small area on her back broke the skin, so we are taking extra effort to protect it from pressure. This means, we have to rotate Amy every 2 to 3 hours. We could move her more frequently, but it is really uncomfortable for her to move. She mournfully and clearly cried, "That really hurts!" when we rotated her this afternoon. It hurts to hear her say it too. So 2 to 3 hours is our compromise between risking bed sores and the discomfort of being moved. At the moment her sores are pretty few and minor. Pray they continue to improve.
Today Amy has been more alert and responsive than she has for a few days. Just now, one of the neighbor dogs was barking and she put her extended finger up to her lips and made a 'shhhh!' noise! Earlier this morning, at the end of her bath, Sarah pulled out the drain and she became very upset and said, "I love the bath!" So we put in some more hot water and left her in the bath for another 10 minutes. She's drunk a fair amount of water as well today.
I'm surprised how our expectations have changed. These really small things seemed like big victories compared to how Amy's been lately.
"It is well-marked, so you can't get lost!" announced the race director of the 11-km trail run right before we started the race. I joked to the guy standing beside me, "I'll just follow the guys ahead of me!" This was a good strategy until shortly after running past a bunch of angry dogs at km 8, the 5 or 6 guys I could see ahead of me just stopped running as we reached the end of a ridge. Not a good sign. One pointed to the ridge a valley away from us where a string of runners was heading down the correct mountain! So we scrambled down the mountain to a dry creek bed that we followed until it connected to the right trail. I estimate our little detour added about 5-10 minutes to our times. I've been eyeing this race for a week or two and decided I would see how Amy was doing this morning and go if she seemed stable, which she was. She's had a pretty uneventful day, sleeping comfortably most of the day. I've been eating enough for both of us, though I'd gladly give her all of my food and fast instead. She's down to 40.8 kg (90 lbs.) today.
Amy didn't do much today. Just kind of slept quietly. Drank a little water and juice.
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. When we took her to the bathroom tonight (she can still go to the bathroom on the toilet if we carry her and sit her on it) she passed out and got so pale that we had to quickly take her back to lie down in bed to get the circulation back to her head. Both of the girls helped me. I hope they weren't too traumatized by it.
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.