Ethan woke up in a grouchy mood and wasn't exactly friendly with the doctors - big surprise. He was having a lot of pain in his chest so that definitely made things worse. He has stopped the Lidocaine patches on his chest and he very rarely takes Tylenol so his pain is higher than necessary.
We met with GI this morning. They want to see Ethan for an upper GI study, but that should be able to be done outpatient at a later date. They were throwing around different ideas about what his swallowing issues could be from, but one they are suspecting is EoE (Eosinophilic Esophagitis). It is an allergic/immune condition that causes swelling of the esophagus. Testing will be able to give us a much better idea of what the problem is.
Big discussion today during rounds was prepping to go home! WAHOO! Our stipulations were to have Ethan's morning chest x-ray look the same or better than Friday's. He also had to tolerate a gravity tube feed without vomiting. Thankfully the feeding went well so one less thing on our list! :)
Today I was given Ethan's discharge paperwork packet, went over all the machines/supplies we need at home, and received a bag filled with almost all of the meds he will need when we get home. We will have a new feeding pump, formula, and supplies delivered Monday, we need our Smart Vest company to send a larger vest, we need to find our nebulizer or buy a new one, and fill our remaining prescriptions that they didn't have available here.
Ethan took four rides in the wheelchair around the hospital today. We went to the rooftop again and visited the playroom twice (even though he was hurting too much to play). Ethan was feeling bad enough to turn down Starbucks, so you know how rough that is!
Thank you so much for all of your prayers! We have been so blessed to have everyone's love and support! Please keep up the prayers for continued healing and that we can go home tomorrow! We had one lady up on the rooftop today chant healing prayers, sing songs, and dance around for Ethan. It was pretty unusual, but nice of the woman (she was an older lady who recently had heart surgery too) and she definitely made us smile. :) Hopefully I will have wonderful news to report tomorrow about going home!
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