Monday, December 15, 2008

A Family Affair.

It's never too early to learn sterile technique. Especially in this gene pool. Of course now Lil Phillip has the cold and has been quarantined to his room. The IV fluids at night for Lily have really helped. Lily still isn't keeping much down. She is doing better than last time, but getting her to takes meds is exhausting. We can hide 2 medications in kool aid, but the mitotane is a big pill pand a half, 4 times a day. And when she throws up, we start all over. I've started trying to teach her to swallow pills with the hydrocortisone -which are significantly smaller. Right now she is sitting on the floor with her mouth wide open, saying that she doesn't want to take it. So I'd have to say it's not going well. Oh wait, she's drinking. That took about 15 minutes. Never mind, it just came back up. Well this is a bundle of fun.
We've tried everything we can think of to get her to take the medications. The anxiety makes her throw up, the medications make her throw up, and she's smart enough to know it. It's hard enough when she is feeling a little better, but now- when she's not really even eating or drinking- it's torture. On everyone. The kids go to other rooms in the house when it's med time. Which seems to be just about all the time. Saturday, Phil took Phillip out to do some Christmas shopping and yesterday I tried to finish up stocking stuffers. People are all grumpy about lines and such and all I am thinking while I wait in line is that I should be home holding Lily, I'd rather be home holding Lily. And then I arrive home to fits and puking and the waiting in line thing doesn't seem so bad.
Lily doesn't try to get out of bed at night. She just yells now Mom! Dad! Wake up! Sometimes she wakes up in the middle of the night with dry heaves, sometimes she wets through her pull up. Last night she soaked the bed. She didn't want me to change the sheets, she just wanted to come to bed with me. So I wheel the darn Iv- which is to say carry because wheeling the silly little wheels across carpeting- doesn't really work. I get her settled and wedge myself between her and Phil- approximately 10 minutes later her tries to roll over- Bella is on the other side of him. I sit up thinking I'll go find alternate sleeping arrangements- Lily senses movement and is up too. She wants to go downstairs. Ok. By this point Phil is up and helps carry the IV and Lily and her 12 stuffed friends and nee-nee downstairs. He settles into the recliner- GO TO Bed! I tell him- he has to fly today- I do not need to worry about him being tired. Like he isn't suffering from exhaustion and 1 night of only partially interrupted rest will make all the difference. I finally get him to go back to bed, find appropriate programming and kool aid for Lily and lay down next to her on the couch. I am just drifting off to sleep when I feel a little person climbing on me. It's Bella- she's up. I look at the clock, 2:37 am. Ugh. I get her juice. Lily's throwing up again. Now Bella's touching Lily. We finally crash and I hear Phil getting ready for work. We must have been a sight, Bella laying across my legs, Lily curled up on the floor next to her IVpole. Tonight will be the same point that in last cycle that Lily got her neutropenic fever. They say we can expect similar patterns, but you never know. Phil is sitting alert overnight so I have Carrie on call just in case.
Lily just retrieved the pack of turkey out of the fridge and is eating it. She shoved a whole piece in her mouth.....this is gonna be messy. Nope- too much she's spitting the extra out, into Bella's bowl. Here comes Bella, I bet she's gonna eat it. I bet you $5. Ha! You owe me. I am surrounded by icky.

1 comment:

  1. You all are troopers. Thanks for sharing story pictures of what life is really like there. It helps us know how to pray for you all.
    p.s. the book for Lily is on the way.


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)