Today finished much better than it started for Hope. She woke up at 2:30 am and was fussy from then until noon today. No matter how many times she was given her pain meds or her sedatives, she was simply not happy. At noon, she finally fell asleep and remained settled for the rest of today. It is so painful to stand by and watch her cry when you're not able to do anything for her. It was such a gift to snuggle her while she slept peacefully in my arms today.
They are pretty sure that Hope is REALLY hungry. This makes sense, she has not received any food since Tuesday. She was not even receiving her liquid nutrients, only sugar water. They started her back on the liquid nutrients tonight and are hoping to start dripping in some food tomorrow. I'll feel so much better when she starts receiving food again.
Hope's face is extremely swollen. The last time I saw Hope that swollen, her SVC (main artery to her heart) was clotted off and she was near death. It's difficult to see her like that and not panic. They haven't found any major clots at this point, nor have they really looked for them. Hope is finally getting a low dose of blood thinner into her body once again. We ask you to pray that it's not too late and there are no life threatening clots already in existence.
Tomorrow they are planning to put a small scope down Hope's throat, while she's awake. The scope will be too small to do anything, other than look at what's there. Please pray that they don't see anything in her esophagus. This would have them conclude that she has a bleeding ulcer, a much more positive diagnosis for her.
I feel like we're currently living on the edge. We're waiting for more terrible news, or another terrible day with Hope. I really need a day with Hope awake, smiling and content. I miss the Hope that we know is inside her and long to have her back. I dream of taking Hope home one day, it may be a pipe dream, but it gets me up each morning. Please continue to pray for Hope and our family, this is a difficult road.