| July 17, 2001 |
| It's quiet here, and I'm going to do a little work on here while Shay is sleeping. Mainly because if I start to cry, she won't see me... Last night was bad. Her mouth sores are becoming so bad, they've increased her morphine amount twice and she is taking ativan for the vomiting, mainly because it puts her to sleep. Anytime she coughs, or sneezes or even swallows, she has to struggle not to cry. Forget vomiting -- imagine acid running over raw meat and you'll get a glimpse of how she feels. She tries so hard *not* to cry -- the nurses have even said how strong she is, that she isn't a 'complainer'. This morning, her face is swollen and sore. The sides of her tongue are swelling to the point where she can't close her jaws. Right now she's sleeping on my bed, since the nurses like for her to move around. I understand why, but it seems silly to be happy with her sleeping in a different place in the same room. They also told us that she will start her GSF (I think that is what they called it) shots today. These are to promote the production of red blood cells. Shay was pretty upset that this is an actual shot, not something run through her line. Poor kid. Oh, if anyone ever has to go through all of this, I have one piece of advice for you -- when they are placing your childs' central line, and ask if you want two lumens or three? Get three -- two makes it very hard to run everything they will need at once. Call that my free advice for the day. Her physical therapist stopped by this morning to take her walking but Shay just wasn't up to it. Maybe we can do some exercises later here in the room. I just hope she's feeling better later. I know she won't, but I can't help hoping. I've discovered a need to talk to someone -- a higher power. Not something I would necessarily refer to as 'God' but someone I know is there, and listening and able to give us strength to get through all of this. I'm going to stop now - Shay is stirring. Like any other parent, I would take all of this away if I could -- this is the part that kills me. I *CAN'T* do anything! |