Sunday, October 20, 2013

Days +50 to +58: Roller Coaster Ride

We've reached our fourth week of being at home and Ezra continues to struggle with pain. Although we had seen improvement, Ezra regressed at the beginning of last week and was having more pain. Two steps forward, one step back. Then mid-week he started to do better again. This past Friday evening, all of a sudden, Ezra was back. The real Ezra. The pre-transplant, spirited, energetic, space shuttle launching, chatty Ezra. We exchanged looks with each other, asking "where did this kid come from?" We would have cried if we weren't so busy having fun. We were so hopeful that Saturday morning the real Ezra would still be with us, but sadly the post-transplant Ezra was back. 

It has been an exhausting roller coaster ride. While the years of struggling with Hyper IgM and transplant have taught us to never think ahead and take each day as it comes, it has been very difficult to not be anxious over whether each day will be a "good" day or a "bad" day. 

We spent the past week having discussions with multiple doctors, nurses, pain specialists, psychologists and child life in an effort to get a better plan in place for dealing with Ezra's pain. We decided to wean him off his pain patch, which he has had since discharge.  Lately, we haven't been convinced that it is doing much to help his pain and may be doing more harm than good at this point. We removed the patch yesterday and are following a schedule of oral pain medication to make sure he doesn't go through withdrawal. So far he hasn't shown any symptoms of withdrawal. In fact, he had a great day today, but we can't quite tell if he is doped up from the increased oral pain meds or he is truly feeling better. He was feeling so good today that he asked to go to the park. A quiet playground and gloves on made for good, clean fun for everyone! Pure bliss for Ezra. We are hopeful one less pain medication will help get his stomach back in shape and might bring some of his personality back. 

If he is still having significant pain, then he is scheduled for a PET scan at the end of the week to make sure the doctors aren't missing an issue that needs treatment. We are concerned about putting Ezra through more trauma and more radiation with additional testing, but if he doesn't improve, we need to be sure something more sinister isn't lurking inside.

Counts are still steadily increasing, which is great. We are hoping that all this pain is just his marrow chugging away and rebuilding and will soon subside. And that the real Ezra will return to us soon full time.