For the last few weeks, Mike's legs and ankles have been swollen...edema. It's a sign that his kidney's aren't functioning well. This past Friday, I came home to find Mike breathing really heavy. He was burping all night long and his acid reflux was in full force. As he burped, stuff would come up, then he would swallow, then cough as he choked down what just came up. On Saturday we had a new aide (an entirely different story and one in which I will share in a different post...it has to do with Medicaid) and I was very careful to show her how to feed Mike. Both Saturday and Sunday Mike had not urinated during the day, only overnight. Today he woke up dry, but DID go during the day. I cut back his food even more, but tonight he still had the acid reflux problem. I've been up with him pretty much three nights in a row. He has a sore on his toe as well as an opening on his lip on the side of his mouth where he takes in food/liquid. He still has his 5 other bed sores.
When I write all this out, I realize it doesn't sound too good. I told someone just today that our BIGGEST problem is going to be accepting "it" when it's about to happen. For 5-6 years now, every time Mike would get sick, we were told that "it was the beginning of the end". I can't even tell you how many times professionals told us this. Thinking back, it was a complete disservice to us, because when the time does come, I'm not sure we will believe them.
As is usual for my family, I get my children's hand me downs as far as technology goes. I recently acquired my son's old iPod. Since I have been in - and up - with Mike these last few nights, I've decided to play him "our" songs. We lay together and listen as our history plays before us. As each song is played, I can remember exactly where we were and what we were doing. I lie there and cry that all we had hoped for our future will never come true. I talk to Mike and let him know how happy he's made me and how proud I am of him. I tell him what a good father he is. I hope (and I truly believe) that he can hear me and know what I'm saying. I tell him all this quite frequently, because I honestly do not know when his time will come. It never hurts to say I LOVE YOU too often.