All Hallows Eve

She's doing pretty good today. Basically a nice rest day for her. She seems a lot more comfortable.

Yesterday we were able to work out how she can indicate pain and get some relief. I think that having that ability, and the staff knowing, has eased her somewhat. She seems to be needing less pain medication today, and has been resting well.

Her father came and saw her this morning. She was communicating with him, and moving around slightly when the staff had to suction her tubing (she hates that). Before he left, however, she got real sleepy and got somewhat sluggish.

She has been a bit sluggish today, but has had periods of awake and communicating. She's not in as much pain as yesterday, although she still is.

When I arrived she had a pretty good fever going on. The nurse and I decided that we wouldn't let Mike or Daniel in until we'd brought her fever down. Well, I can bring a fever down with the best of them, so Mom went to work. About an hour later she was back down to 37.5c from 38.8c. While cooling her slowly I took the opportunity to move her joints, flex and stretch, rotated the ones that are designed that way, and I massaged her to help circulation. Then the Lift Team came in to move her position in the bed.

When they put her flat and adjusted her position she started having trouble breathing. They brought her back up into position, but she was still having some trouble. The nurse went to suction her breathing tube and Sara bit down on it - she hates to be suctioned. She started turning purple and trying to cough. Well, she's not listening to the nurse to relax her teeth so she can suction, so I get the bright idea to stick my finger in her mouth and pull her lower jaw down.

Well, it worked, but as payment for her hating to be suctioned she nearly bit the end of my finger off when Nurse-Paige was done. Probably serves me right...but she did open her jaw for me...

So, I talked to her afterward. Let her know that she can't fight when its time to suction. That I know she hates it, but it must be scarier not to feel like you can breathe, which she acknowledged.

Nurse-Paige said she wanted to give Sara a nice rest period, after the fever, move, and suctioning - but said we could still be in the room with her.

Mike came in and it is the first time in a week that our little family was in the same room with each other. The three of us are very close, despite our occasional challenges. We sit on the couch, watch TV, and eat junkfood together once a week. We goof around together. And, sitting here in the same room as my beautiful daughter and her gnarly brother I wanted so very much for us to just be sitting on the couch - this scene far away from the reality we currently face.

Daniel came in and Mike and Daniel stayed with her for a while. Just basically being able to see her helps them so much. Helps me so much. Can help any of us...

The hospital staff has been amazed at the calm all of us radiate and the hope and patience her family has. They tell me that I'm so brave and calm. I've told them that I'm scared shitless all the time, but I am radiating my strength for her. I break down here and there - sometimes in the same room with her, most of the time not... I remind them that it is not as bad as it could be...she could be dead. I've been through that outcome with one of my children already. Trust me, it sucks... ...but she's not dead... ...she's very lucky to be here... that means so much...

So this, staring into the unknown with Sara in my arms...this I can handle.