Sunday, January 12, 2014

Days +139 to +143: Wait and See and Hope

After an insanely long day at clinic, we don't have an answer as to what is going on with Ezra's liver, which is maybe a good thing and maybe a bad thing. The ultrasound was normal, except for a slight increase in the size of Ezra's liver since his last test about nine months ago. The doctors are not too concerned about this increase in size and do not think this is what is causing the increase in his liver enzymes. His liver enzymes increased again on Friday, but not as much as they have been increasing over the past week. The hope is that the increase is from the parainfluenza virus and not something else. If the levels go above a certain number, then he will need a liver biopsy, a surgery we really do not want to put him through. For now, we will just wait and see what happens with the levels over the next week.

Ezra's cough had worsened over the past few days. The doctor detected some congestion in Ezra's lungs on Friday. He is now on an inhaler in hopes that it will relax his airways. He was a little better today. After fighting one battle against pneumonia, the mention of lung congestion is frightening. We are hoping he turns the corner very soon.

We are truly blessed with such a resilient, brave boy. Ezra stayed as still as could be during his ultrasound and asked the technician and radiologist 20 questions, while listening to every word the radiologist said (each time the radiologist said "duct," Ezra said "Did she say duck? Is there a duck in my belly?"). We were concerned about Ezra's reaction to using the mask and tube contraption for the inhaler, but when he saw it, he exclaimed "hey, that looks like my static electricity tube!" The respiratory specialist looked at him and said "how did you know that this is an anti-static tube?" Yup, we're fairly certain that he is channeling Bill Nye. Suffice to say, the inhaler is a piece of cake for him. Ezra behaved better than we did during the way-too-long day, with the help of his amazing friend Jessica from child life and these two characters!

Here's to hoping this week will be a better one.