During the first few days in the ICU Stephen struggled to get enough breath, to sleep, and to communicate. Despite all of this, as he has throughout this entire ordeal, he has shown great courage and determination His goal was to get out of there as soon as possible and get that tube out of his throat! Things were pretty stable other than not being able to sleep for more than a few minutes at a time….for three nights in a row!
After a rough night, Monday morning he took a serious turn for the worse and the medical staff determined that his lungs had begun to bleed. The first sign of this diagnosis was that his blood counts were dropping. They then put him under a deeper sedation (finally!) so that he could relax and quit struggling to live with a ventilator tube jammed down his neck. We were all thankful for that. He was so tired and the constant feeling of trying to breathe through a straw was so draining both physically and mentally.
As the doctors tested and learned more of his condition they concluded with more certainty that Graft vs Host Disease was causing pneumonitis. They decided to begin the Etanercept drug. So Monday about 9 am they gave him a shot of Etanercept and gave him 1000 mg (1 g) of prednisone.
Today we did received some encouraging news. Stephen’s x-rays look better than yesterday. His Hematocrit (red blood count) has stayed the same for a few hours (25) and his platelet count is finally as high as they would like it to be (above 75). He’s used up all the platelets they can get that are a match for him and so they have started giving him some non-matched but compatible platelets as well.
His kidneys are really struggling now. Many of the drugs they are giving him are very hard on the kidneys. He is also retaining a lot of water. Normal functions are not clearing the water from his body so they may move to a temporary dialysis. They are considering placing a catheter in his neck area tonight so that they can do dialysis in the morning.
We feel encouraged and hopeful. The doctors told us to understand that he is not out of the woods but is definitely moving in the right direction. They told us to take it one day at a time and not try to look any farther ahead than that. We are grateful to all of you who have prayed with us, and for us, throughout the day and night on Monday. The doctors told us that he could still recover fully from this setback if the drugs bring about the desired results and if he continues to make forward progress. We know that through the power of God and your prayers and faith that we are being carried day by day. We seriously don’t know how we are walking, talking, and functioning but we are!