Happy 2017 everyone! We hope everyone enjoyed the holidays. Ezra is doing well, but had a couple of minor setbacks that have prevented us from being discharged to outpatient treatment. He had been having trouble tolerating his feedings, as well as some trouble coming off of his pain medication. They were able to get the pain medication issue under control and he is now almost fully off of it, but we are still working on getting him to tolerate larger volumes of milk.
To see what has going on, he had an endoscopy on Tuesday. They found that his stomach lining was thinning and very inflamed, likely causing him to be nauseated and making it hard to keep food down. Poor little guy has been such a trooper. Something else that they found was that Ezra has a mild case of Graft versus Host Disease (GVHD). This is something that is common with stem cell transplants, and occurs when the new cells attempt to attack the new body. Luckily, his case is very mild and can be treated with steroids that we started today. The doctors expect him to start feeling much better overall by Sunday. Once that happens, they will start increasing his feeds again and hopefully get us discharged to out patient.
We are continuing to get 2-4 hour passes out of the hospital daily, which helps all of us not to go too stir crazy. Ezra’s white blood cell count has also been going up faster than anticipated, so they were able to stop the medicine that helps increase it since he is doing so well on his own. He’s been sleeping very well on his own and LOVES stroller and car rides. On days he is feeling well he is very smiley and he loves to watch mommy wherever she goes (we started looking in mirrors but he would rather look at her reflection in the mirror than at himself). Please keep him in your prayers this week, as we hope his tummy discomfort subsides and that he is able to tolerate his feeds. Thank you all for your continued love and support for this special little one!
Stroller rides put him fast asleep!
Practicing tummy time! He lifts his head very well!
Tried to catch a picture before he fell asleep!