Ryan's had what seemed like the seven-year itch since he got home. Looking at all possible causes we've eliminated many medicines, changed to Dreft soap, added a second rinse to the laundry cycle, soaked in Aveeno baths, lathered on lotions, taken mega-dose anti-histamines. All to no avail.
Eosinophils are the white blood cells associated with histamine and allergic reactions. They are normally around 2-3%. Ryan's were at 20%. This suggested an allergic reaction of some kind - although "eo's" can also go up with GVH disease. No other symptoms or lab results suggested GVH, so we began focusing on potential allergens.
Delighted that he's growing blood cells and that they are capable of working! Sometimes immature cells can act a bit like teenagers (apologies to any youth reading this - and a disclaimer that I still sometimes default to my youthful rebelliousness) - they act out. So I knew there was a possibility that this was simply his new cells "doing their thing". And that this may just be a storm we need to ride out..........
Racking our brains and tweaking things daily, one day I suggested they wash not only the coverlet for their comforter, but the comforter as well. Ryan and Sophia told me it was down and couldn't be washed. Light Bulb Moment!! We switched comforters and - voila! - no itching the next day. Whew!!! Cured! We'll be avoiding goose down for a while.
Ryan's counts are (drum roll....) - NORMAL!! The cells still need to mature to be able to effectively protect him from infection, and we're not out of the woods in terms of chronic GVH which can occur in the next few months. He's still very nauseous and struggling to maintain his weight. And cold all the time, and tired and weak. All this is part of the process, and time is our friend now. We have confidence that with each day and week and month that goes by he will slowly gain strength and return to health.
I had the opportunity a few weeks ago to meet with the transplant nurse coordinator and the patient affairs representative from Brigham & Women's Hospital to discuss the frustrations we had during Ryan's hospitalization. In preparation for our meeting, I tried to look at the problems we encountered from a "consultant" point of view - looking at the system and policies, what went wrong, possible causes, policy changes that might minimize recurrences of the lapses, etc. I wrote up a document identifying the problem and the setting in which it occurred, which level provider was involved (nurse, resident, attending, pharmacy, etc), and suggestions for policy modifications that may correct the problems.
I was a bit nervous before the meeting - worried that my emotions would get the better of me and I'd turn it into a whine-fest. As I gave them copies of the document, I had to warn them that my attempts at objective observation were unavoidably tainted with a bit of maternal angst. It was gratifying to be able to go over things point by point and discuss with them things that I thought might be contributing factors and make suggestions that might help others.
I know in my heart that without the resources and expertise of those at Dana Farber Cancer Institute and Brigham & Women's Hospital Ryan would not be alive. And I am truly and deeply grateful for this. While it was therapeutic to me to "vent", my hope is that by reviewing our experience, procedural changes can be made that will take the level of care experienced by patients to the same level of excellence as the transplant itself.
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