Last night, Ethan came home!!!!!!! I can't tell you how good that feels! But we still have no diagnosis and the saga continues . . . I can't tell you how bad that feels. Two months to the day in the hospital -- wow!
After discharge orders were placed at 9:00am on Friday, it took a long day (because of communication errors of course!) to come home. Last night we got home around 9:30pm with Ethan in tow. I can only think that home will help his healing process -- we sat him on the floor and he started patting the carpet and laughing. Seeing his brothers was also very exciting for all parties involved.
It became apparent very quickly that we have our work cut out for us as we had to fill his feeding bags, prime the lines, and prepare his pump. Robin is a seasoned pro at this -- me . . . not so much! Ethan slept like a rock last night, the first uninterrupted sleep in two months. He woke up happy this morning as well.
Where we go from here we still don't know -- a doctor friend from the Mayo has recommended UCLA, so that may be next. For now though, ETHAN IS HOME, and today is the only day that matters!
This journey is far from over, so please keep the prayers coming. After two months, he essentially weighs the same, and unlike two months ago, he now has tubes sticking out of him and diarrhea. In many ways, he is worse off than when he went into the hospital, so it's important that we keep him gaining weight as we work through this. If we can't keep him gaining weight, we will end up back on Floor 3 of Phoenix Children's Hospital.
We have made some great friends in the hospital that we continue to keep in contact with, and the support everyone has given has been overwhelming and come at just the right time. Thank you all as you have prayed, helped, loved, and followed us on this crazy ride. I will do my best to continue the updates, though likely in a blog so you all don't continue to get pestered with my emails. I would hate to end up in your junk email filters!
Well, I've got to go change a diaper (haven't done too much of that lately!) and make breakfast. Robin spent her first night in a bed in two months last night -- I wouldn't be surprised if she surfaces out of the bed sometime Monday!