It's wonderful that Juliana is able to go to Children's Hospital Boston, but terrible that we have to leave so many new friends who are almost like family to us. I think this is the hardest part about preparing to leave. We have become so attached to many of the nurses and doctors at Yale. I can actually sleep at night knowing that she is in such caring hands. As the week goes on we continue to have to say our goodbyes to so many nurses that have been there through many storms and allowed me to cry on their shoulders. Even if they have only actually had Juliana as a patient once or twice they continue to check up on her and come visit her to say hello. It's been a very emotional week for us but I know it's for the best.
Juliana has been at a stand still for the moment. She is just hanging out in her crib day to day with out very many changes. Her oxygen requirement continues to fluctuate but her vent settings have remained the same. I am hoping that Boston will be able to help Juliana get back to feeding again and with the magic of omegaven repair her liver that is continuing to deteriorate day by day. I am still hoping to have Juliana home for Christmas, but as long as she is getting better I can deal with spending Christmas in the hospital.
Please continue to pray that Juliana has a safe trip up to Boston (her first time ever leaving the hospital), and that her liver will make a speedy recovery while her intestines heal and begin to gain function. She needs to eat and be able to absorb her nutrition through her intestinal system before she can come off of the TPN and eventually come home (or at least to Connecticut).