Doug has now been in the hospital for one month. The night I called the ambulance I had no idea what could be in store for our days to come. Many of you have asked how the other transplant patients are doing. They are all doing well. I have heard of only one urinary track infection. Certainly what happened to Doug is not typical. In fact, it is highly unusual. Who would have dreamed...
Today was a mixture of events. When I came in the room, a respiratory treatment mask was on Doug and it had completed. He was saying in a soft voice, because that is all the louder he can talk right now "Help Me". With the tube in his nose the mask on his face he feels claustrophobic. We have been holding the mask for him so that he does not have to wear it. I was mad. I took off the mask and laid it aside. I also found Doug's arms down in what looked to be an uncomfortable position pinned to his side. I went to the nurse and asked her where respiratory was and wanted to know who had positioned him and when. The respiratory therapist did not show up for another 30 minutes. He would have been left alone with no way to get help had I not shown up when I did. Poor Doug spent the next few hours asking me please not to leave him. He is afraid to be alone. Much of the time he has mucus from his lungs that he can only cough up to to the back of his throat. I suction him the full time I am here. If I were not here, I am not sure at what point he would get help. I can't be here 24 hours a day. It is distressing for both of us.
I have concerns about going to a new facility so far from home. It will be months before Doug recovers, and we pray he recovers. Can I keep him safe? I try not to think to far ahead, but I have to anticipate his needs too. He is so afraid when I am not here.
Recovery is difficult. He looks so vulnerable laying here, but he is making progress. Very slow progress, but it is progress. He can shrug his shoulders now and moving his head is easier for him. When the OT was working with him he could feel some resistance in Doug's arms as he extended them. If he could get the use of his arms back it would be so wonderful. He is still moving his hands and and toes ever so slightly. The OT recommended I get a small balloon or ball to put in his hand and use a vibrator on the balloon to give him more sensory feedback. I really love this OT. We have not seen him for a week. His name is Knox. He is from Tennessee. He does what good therapists do, he builds relationships. He started by talking to Doug about the music he likes and talks about life in the 70's. (Doug loves oldies). Doug likes Knox. He responds to him.
The roller-coaster continues. One of his nurses reminded me that he will go forward and back, and that it will take a long time to recover. Watching your loved one struggle is so difficult. I have no way of predicting what the next day will bring and so everything is new each day. Perhaps if I were a doctor, I would find this challenging or interesting. But as for me, I would like to have things only get better, less darkness and more light. Upon reflection, our Christmas miracle is that Doug lived. The doctor's really were not a all sure that was going to happen and were constantly preparing me for the alternative. So far, day is only beginning to break on the Epiphany.
A little Facebook Quiz gave me this scripture for 2017. It seems very fitting. I will hold on to it.
Deuteronomy 31: 6
"Be strong and bold, have no fear or dread of them, because it is the Lord your God who goes with you; he will not fail you or forsake you."
And my friend Bev, gave me this scripture: I will hold it in my heart.
Joshua 1:5 "I will not fail you or forsake you."
And so we pray:
God of Light, a glimpse of your presence is peaking through the darkness. It is a touch of warmth in the cold darkness. We want to draw close to it and draw strength from it. We yearn for light. We feel your presence in ancient words and the whispering of our friends. "Be strong and bold...I will not fail you or forsake you." We want an easier way, we want an end to suffering. Dear God of Light, we pray that you will warm us, heal us and give us courage. Hasten the renewal of Doug's body. Help him to know that you have plans for him, plans to prosper him and not to harm him. We ask this, with the full knowledge that you are with us and doing better things for us than we can ask for or imagine. Amen.
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