Wow. A lot has happened since I last posted. After the last post, Stephen’s throat began to heal but then he seemed to stay the same for several days. He could swallow, but would often throw up what he drank. His throat was irritated, he started coughing, and felt short of breath. He had some water retention but it got better with meds and less fluids.
Monday morning he had been up and was really panting hard while getting back into bed. I hooked up a spare oxygen monitor and checked his oxygen level. It was at 75. Everyone at the hospital did a great job of reacting quickly, getting him on oxygen, giving a breathing treatment and other supportive measures. Doctors and Nurses had listened to his lungs multiple times a day and they were completely clear sounding so pneumonia wasn’t suspected. Cardiology came up and did an EKG and then Radiology took him down for a CT scan with contrast. The CT scan showed major involvement of fluid in the air sacs of his lungs. Basically his entire right lung and over 50% of his left lung had fluid in the air sacs. He was working so hard to breath and his oxygen levels were struggling to stay up even with oxygen support. He was taken in for a bronchoscopy to look at his lungs and take some samples of the cells. These were sent for testing. The decision was made to move him to the ICU for more support. In ICU the pulmonary doctor checked him and talked to us about his situation. He was taking about 80 breaths per minute. The doctor explained that he was exhausting all his physical and mental energy breathing. He also showed me how his chest and stomach were moving opposite each other as he struggled to breathe. He felt like we should move toward putting him on some assisted breathing. He didn’t want to wait until it was an emergency. We agreed and by they time they were ready to intubate him he was really getting tired. Neither Stephen nor I expected how difficult this would be. I’ll spare you the details but it was really rough for a few hours then. Luckily Jeff arrived as this all began. After Stephen’s body adjusted to the sensation of the tube in his mouth and throat, lots of medication to calm the body, and Stephen learning how to breath through a straw, things began to settle down. It took an incredible effort on Stephen’s part to get his head wrapped around his current situation and to start fighting. He did a great job. For the first 12 hours or so he would cough fluids up from his lungs and would have to have assisted suction. To begin with, it was about every 15 minutes. Then, about every 45 minutes, and now he only needs help with coughing or suction every few hours. He did an amazing job. Much better than me – I ended up with a migraine and had to go sleep in his old bed in the BMT for 5 hours till I could see straight again! Good thing Dad’s are tougher than Mom’s at some things. The ICU has a great team of doctors and nurses. They have had Stephen up walking twice (it takes 4 people to walk with him), they had him sit in a chair twice, and have been very helpful and supportive of any breathing problems. The source of the Pneumonia is the real question. Labs, cultures, and other tests have all come back negative. There isn’t a virus, bacteria, fungus or parasite that they can blame the pneumonia on. Given these results, the conclusion is that the pneumonia is a result of graft vs host disease. One of the possible symptoms, (a rare one of course) is pneumonia for no-good-reason syndrome. It is actually an inflammatory response caused by the battle with the donor cells. It is treated with high doses of steroids. So tonight, they started him on his first dose of steroids. I’m writing this with my limited understanding (and lack of sleep) so if my story changes tomorrow, you’ll know why.
The BMT floor has quotes hanging on the walls. One has become my favorite this week. It reads “When you think about quitting, think about why you’ve kept going this far.” Cancer patients are endurance athletes in a sport that isn’t so fun.
Stephen has received a couple of very special Priesthood blessings in the past week. They have really given him strength to face his current situation. We are so thankful for your continued prayers. I have thought about it several times today. I’m so involved in what is going on I can hardly form a prayer longer than a few words. I find great comfort in knowing that all of you are able to pause and pray for us. We love you!