Wednesday, August 28, 2013

Days +3 to +5: Pain, Pain Everywhere

Ezra continues to be in a lot of pain, too much pain. It seems like everything hurts him from his tush to his mouth to his stomach. He has been spending much of his awake time crying and uncomfortable, and his sleep time crying out about dressing changes and medicines. It is so very sad. The doctors have been increasing his pain meds slowly, but steadily to see if we can alleviate some of the discomfort. We haven't had much success yet.

Ezra's hair has also started falling out and the itchiness is driving him crazy. We can't shave his head, at least not yet, because that would be more traumatic for him. Last year, Ezra didn't have much hair, and while he lost most of it, he always had some hair on top, so he didn't notice when it was gone. In the past year, Ezra's hair has grown in fuller than before and curly. He is very proud of his curls and has never had a haircut. We know that he is going to be upset to lose his curls. We're just hoping that he keeps a little hair on top like last time so that there is one less thing for him to be upset about. We're going to miss those curls too and will eagerly await their return. 

Ezra was able to enjoy a visit with Cookie Monster through the door like old times. He makes a terrible mess and you always have to be sure to have cookies handy.

Thank you to everyone who has flooded the donor room to give blood and platelets. The response has been incredible. Ezra will continue to need platelets and blood for the foreseeable future, so please keep spreading the word. The doctor told us that Ezra is holding onto the platelets well, which she said means his body isn't destroying them as sometimes happens, and it is a sign that his GI track may not be in too bad shape because the platelets would be used up quickly to deal with inflammation and oozing.  We said it is because the platelets are being given with love by Ezra's supporters. 

We are trying not to have too many expectations about when the neutrophils will show up, but suffice to say they can't show up soon enough. Any bit of relief will go a long way at this point. Grow cells, grow.