Heres the Deal

Ashley Kate has a swollen face. A really, big alien looking, freak like face. That is really hard for this mommy to type because I love her "normal" face. Unfortunately it disappeared about 48+hours ago. The first 24 she looked like Popeye. Literally. Cheeks, squinting eye, wad of spinach tucked away. The next 24 we had hoped for her to wake up "normal" but instead she traded her Popeye look for a real "Pop Eyed" look. Both eyes appeared to be popping out of their sockets from the swelling. This morning she has the right eye open and the left eye winking.

This afternoon at 3:00pm the vascular surgeon who examined her yesterday scheduled a SVC gram. I think that stands for a Superior Vena Cava Venogram. Which means we will send a dye into her line and follow it under interventional radiology to see where it flows, if it goes slow, or if it stops. We think there is possible damage from scar tissue causing the return flow or drainage of blood back from her head into her vena cava to be sluggish. There is also a possibility of a blood clot. So what do we do? First of all we have this test performed to give us more information. Then we decide from there. Can we remove this line? Use some heparin in it to keep it from clotting off? Insert a balloon or a stint(this is the extreme and we don't plan on going there, but it is a possibility)? Will she lose access to 4 of her 6 sites due to what we find? There are all questions that we need to figure out before we can transfer.

At this time we are still planning to go. We just don't know when. We are filling up her tank. Currently she is receiving 150mls of blood. Then we will chase it with some lasix. Her weight is up quite a bit from the swelling and we need to pull some of it off. Hopefully it will help so we don't run into more respiratory issues. She is still requiring 1/2 of a liter of oxygen to keep her saturations up, but we think this may due to the swelling and the pressure in her neck and face. The good news is that she is sitting up today and peeking out from underneath her swollen eyelids to play. She is growling like a pirate at anyone who tries to touch her or talk to her and I actually find it a little amusing.

As soon as I have the results from this test I will let everyone know. Your prayers for our little pickle are very much appreciated today. We are so close to arriving a mere 45 minutes away from our front door and from seeing Dave, Blake, and Al. Hopefully the transfer will remain a possibility. Hope you guys have a great day.