Narcotics and uncertainty

All week there have been test and more test and lots of uncertainly. It started with the pain in Michael's shoulders,chest and back, which led to lots of tests, none of which were conclusive about anything. We have run into a couple of problems: The pain, and the blood counts.
The pain. When we got here Monday night they started an IV, since his CV line had fallen out and they had to pull his PIC line. Thye got some pain medication happening, but during the day it became obvious that it wasn't controlling his pain very well and by evening he was crying almost every hour and a half when his pain meds would run out. Unfortunately the nurse caring for him had her own opinions about his need for pain meds and would just not come when he called crying for medication sometimes making him wait an hour in pain. At one point she told us that " you aren't really in that much pain". We were both getting a little distressed and frustrated. About that time David came up to give Michael a blessing and saw what was going on. He stayed here and helped me advocate for appropriate pain control for Michael. Thank goodness for BIG brothers!!! :) How I appreciated his physically and emotionally present stature at the nurses station that night!! After some time they ordered what is called a patient controlled analgesic, or pca, that allows the patient to dose himself up to a certain point when needed. The only problem is that they set the dosage to low and so the same problem continued until about 5:00am the next morning when a compassionate nurse finally turned up the dosage and he was able to rest without pain for a while.
That was good and he appeared to be doing well for a couple of days, until they decided to change his pain meds to get him off the IV. The drug they used was long acting and the day he was on it and the day after they took him off he was so high he was making little sense and seemed confused, disoriented, and easily overwhelmed. His coherency is finally returning. The pain is still there, sometimes pain control is working and sometimes it needs to be tweaked, but it is better than when we started. The doctors in checking the pain determined that it seemed to be radiating from his abdomen. It seems with all the narcotics that his bowels were not functioning very well. We had hoped that if they got that working that his pain would go away. It has not.
The counts. They were looking really good, but just before he was admitted his platlets started falling. He was also on blood thinners, from the clot in his neck, so this had begun to pose a bleeding problem. One night he got a small cut on his arm, which bled for 8 hours through everything on his bed, even the mattress cover. They are unsure why his platlets are falling, so more tests. Now his hemoglobin has been dropping and his creatin (which has to do with kidney function) has increased to about twice what it ought to be. He has developed quite a bit of swelling and more pain. So we wait and watch to see how he responds to removing all of the medications that could be creating any negative effect on his kidneys.
After all of this uncertainly, watching and waiting, I have to say that I still feel blessed for each day that we have. I have gotten to know a few people up here and I hear about things like kidney failure, liver failure, severe GVHD, ICU . One of the families that I met up here,the mother has the same thing as Michael, been here in the hospital since January and has just been moved into pallative care. She got an infection and I guess they don't think she will make it. They have a two year old. Michael is free from infection right now. What a great blessing. He is tired of the pain, tired of being sick and he cries because he just wants to get better. This is the longest continuous treatment and the hardest of any that he has had so far. We are grateful for the prayers, comments, email, cards, calls and thoughts that are sent our way.
We have learned more about ourselves, God and the good people in our families and circle of influence than we we would ever experienced any other way.