Thursday, April 17, 2014

Days +228 to +238: A Better Week

Overall, this past week has been a better one for Ezra. Instead of dropping again at the one week post-IVIG mark, his platelets actually increased. He is now past the two week mark from the last dose of IVIG. Ezra's hemoglobin has also remained in the normal range. Despite these good numbers, several indicators of cell destruction are showing that he is still destroying his own cells. As long as these indicators show that destruction is still occurring, we are not in the clear. There was, however, a small amount of improvement with these numbers - enough that the doctor allowed another small steroid dose decrease last week. 

The most important point is that Ezra's numbers have improved (at least for now) even with decreasing the steroid dose. They have also been tinkering with the dosing of Ezra's immunosuppressant because his blood levels had been showing that it was undetectable. The last test showed that the level of the drug in his blood is at the right point, so we are hopeful that this is also helping his counts to improve. 

The take away from this past week is that the situation is improving, but we know that we can show up any day for clinic and find that the destruction has ramped up. Things remain day to day. 

Ezra has been handling the three times a week hospital visits for meds and bloodwork better than we could ever expect. He regularly asks for confirmation that "we are home more than we are at the hospital," and for now, as long as the answer is yes, he seems satisfied. The days are long and hard, but he remains happy and energetic. We sometimes feel bad for the other patients in neighboring beds because Ezra gets so excited (and loud!) while he's playing. He keeps us all busy with the creative projects that he comes up with - never ceases to amaze with what we can accomplish in a tiny hospital cubicle. Our focus as always remains on making sure he continues to develop and learn despite his restricted life - no small feat, especially with this latest turn of events.

We gladly accept a better week while we remain always on guard for the possibility that tomorrow everything may change.