Gearing Up to Go Home

This weekend has been great for Joey! He had some physical therapy on Friday morning, where he had fun standing and bouncing on his feet, and was even able to do a bit of modified tummy time! In the afternoon, he was taken off of the oxygen, and has been breathing well on his own since. Yesterday, he left the PICU and was transferred over to the "step down" pediatric transplant ward. They paused his feeding tube, and he has been taking bottles for over 24 hours now. He is smiley and giggly, with the occasional fussy fit... Just like his pre-op self! He is progressing so well and we couldn't be more thrilled. We are so proud of him, and how well he has handled this entire experience.

We miss our PICU staff already, and are so thankful to them for the care they provided Joey (and us!) and the love they showed him. After almost three weeks in their care, they feel like family. Several of them have already stopped by to check on Joey in his new digs, and it means so much that they have gone out of their way to do that.

In talking with the transplant doctor yesterday and today, she is hopeful he will be discharged on Tuesday. Before then, he will need his two drains and NG tube removed, and will need to wean off of his pain medication. Additionally, Chris and I have to pass some sort of observation test where we essentially take care of Joey for 24 hours by ourselves in the hospital. This will demonstrate to the medical team that we understand all of his medications (of which there are about 10), when he needs them, what they are for, how to administer them, etc., and how to properly care for his PICC line. His PICC line will remain in place for the foreseeable future, as it will allow for easier blood draws, which he will need at least once a week for the next several months.

We are so looking forward to hopefully being home with him in a few days... maybe even in time to take his 5 month photo in his crib, like all the prior months. We know that even at home everything will all be different for a while, but we are so grateful that he'll get to come home.

Thank you again to everyone for your well wishes, thoughts and prayers, gifts, support, and love. This has been the longest, most difficult three and a half weeks of our lives, and we couldn't have made it without you.

Love to you all,

The Moschellas