Tuesday, January 20, 2009


Monday Night-Tuesday Morning
The only reason I am not sleeping yet, is because Bella is not sleeping yet and she can't be trusted not to wreak havoc if unattended. The past couple of days Lily seems to have constant Belly aches. She calls it "Bubbles gas". Since we have been consistently using her feeding tube, we have been watching carefully for infection, but figure her tummy is gonna be a little sore. So yesterday she took two naps and I figure she was hitting her "nadir" as far as counts go. She felt warm to me, but her temp never was above 99. She went to bed and I was up a couple of times to check on her. By 2 am she was moaning and crying and saying her belly really hurt. Her temp was still not high, so I turned her feed rate down and got her back to sleep. At 3 am, some yahoo decided to celebrate the inauguration, Chinese New Year, the temperature drop....with an elaborate fireworks display which sent Bella screaming into our bed. I get her settled and Lily is back up. My head is throbbing, but I chalk it up to lack of sleep. At 4 am I take her temp and it's 99.8 under her arm, which means it's closer to 100.8 which qualifies for a call to the on call doc. She is all bundled up, so I unwrap her a bit, try and get her comfortable. I get dressed and pack a bag and call the doc. Since it's a holiday, we have to go into the ER. I pack her access needles, since they can't be trusted to have them there, extra masks, since everyone there is nasty sick, and all her related meds. We get to the ER and the clerk checks us in and asks us to have a seat. The ER waiting room is by no means full, but one lady obviously has a nasty coughy contagious thing going on that I want NO part of. I am about to request a nurse when another clerk comes out, takes one look at Lily and asks if she's Oncology- I said yes and neutropenic. She goes to get a nurse and we are put in an isolation room. One of the Peds residents we know comes in and gathers the data and starts a plan of attack which includes fluids and antibiotics. Lily is moaning and quite uncomfortable. Finally we get her port accessed and got her some tylenol and antibiotics and we are waiting for her room to be ready upstairs. She drifts off to a restless sleep- every few minutes jumping awake and saying she's falling. I wrap my hands around both of hers and she nuzzles into my arm. We both drift off. My head is just throbbing and I look at the clock- 8:30. Probably just need caffeine, but it's gonna be another hour or so til I get a chance. My stomach has that "I didn't sleep last night " icky feeling. By the time we get upstairs to the ward, Lily is doing OK. Her counts are low across the board and will be getting platelets and Red blood cells later in the day. She's had 3 xrays and about 24 different people in to look at her and I am not feeling well. We finally get into a holding pattern and the nurse gives me tylenol and says to catch some rest before the next round starts. As I lay there I'm beginning to feel like this is more than icky tummy. I call Phil who is at alert. He starts to make the calls to relieve me. Stew is with the kids already. And then I get that tell tale tickle that tells you that you are going to get to see whatever you had for dinner. I help Lily go potty and it hits me. Projectile, nasty 10 minutes that seem like forever, pulling every muscle in your neck, puking. This is bad. Very bad. I'm sick and chances are I've already infected her and she's neutropenic. I don't think I could have felt worse at that very moment. I clean up and call Jackie, I can't drive home, I can barely stand. Lily wants me to snuggle with her and I wish I could with all my heart. I have her call the nurse and then I call Phil. We'll have to have the nurse or aide sit with her until he gets there and my stomach is lurching and heart breaking all at once. Back in the bathroom I go. I stay there until the nurse gets there and then I leave, Jackie the absolute angel she is, has the car waiting outside the hospital. The whole time in my head I hear Lily's sick little voice telling me as I left " I'm sorry I made you sick mommy. I love you." I know she is in good hands with Miss Sandra the aide, who is reassuring her she did not make mommy sick. My head is spinning and Jackie realizes we aren't gonna make it to my house, so she takes me to Stew's and tucks me in. I wake up completely unsure of where I am and mortified that I only vaguely remember getting there and I have NO idea what's going on with Lily. I text Phil and head downstairs- where Jackie greets me with an entire sickie care package, complete with toothbrush and toothpaste and an update on Lily. Phil was at the hospital within a half an hour of my departure, Lily is in a lot of pain and they can't give her good meds until they rule out certain problems. Well get to rulin' out I say. She's been there for over 6 hours, that's too long to be in a lot of pain. Not too mention she's got a cold and I know she feels icky. We formulate a plan to get my van. She really doesn't want me to drive- she seems to have the impression that I can't dry heave and drive at the same time- But I appreciate someone looking out for me nonetheless. We will get my van from the ER parking lot, drop her car at Stew's house, she'll drive me home and Stew and she will carpool home. Only problem, I left the lights on in the van, it's dead. Jackie is laughing hysterically- could anything else go wrong? I inform her that Grandma Helen's famous for saying "it could be worse" and the family finally had a moratorium which led to an intervention on the outlawing of the usage of aforementioned phrase. It seems like when you taunt the gods with such phrases, they like to test you. It doesn't seem to matter if you pass or fail either. But I digress. Jackie drives me home.

I open the door and Kiera is perched on the couch with a dripping ice cream cone, sobbing uncontrollably. Stewart informs me this is result of his telling her she could not have ice cream in the living room. She informs me that Phillip is ruining her life, meanwhile Bella runs up to me and she is covered in snot which she lovingly smears all over my leg. Phillip informs me that he is definitely NOT ruining her life, but he is hungry. I am so grateful that Jackie took me to get rest- there is no rest to be had here. They help keep the situation under control and I try broth. Umm not a great idea- back to laying down. I call Phil. He sounds at the end of his rope- in the sense that Lily's still in pain and they need to do a CT scan first and that isn't scheduled until midnight. We finally get everyone fed and situated and Stew and Jackie go to rescue the van and start the studying and whatnot they need to get done before morning. What would I do without them? Everything happens for a reason.

Phillip is restless, Kiera is moody, Bella is snotty. Oh I already iterated that. I finally get them in bed- not their own beds, but beds. Bella fell asleep while I was starting this blog, I carried her to bed, Phillip was in her bed. He immediately snuggles with her. I get that warm gooey feeling in my chest. She snuggles back. Aaaah. I can go to bed. An hour later Kiera is coughing, Bella is coughing and in bed with me. I check on Phillip who is now in Lily's bed. I get the girls cough medicine and we go about this business called sleeping. So apparently many people do it for consecutive hours at a time, glorious, I should definitely incorporate this into my routine. It might even prevent bouts of gut wrenching vomiting. Lord knows I've become a hand washing freak. This morning's updates: Phillip is home from school. Bella still coughing and runny, Kiera is a little more functional, I am way more functional but achey. Lily is feeling a lot better and is requesting food. All of her scans are normal so they surmise her aches are side effects of chemo. She is getting her mitotane regularly now and it has caused a further decrease in the function of her good adrenal gland, that causes a salt decrease and hormone decrease and some aches. Her fever is gone. There are rumors of her coming home today, although the home environment is less than disinfected at the moment. I can't remember the last time I was still in bed at 10 am, so my time is probably up. I'll leave you with my conversation last night with Phillip:

Are you throwing up because you have a baby in your belly? Definitely not, it's a virus.
How do you know? I KNOW.
Do you feel really bad? Yeah.
I know you feel bad mom, but no matter how bad you feel, I know Lily feels worse.
I know buddy, I know.

1 comment:

  1. Thanks be to God. I have been praying all day for all of you, and I will keep praying for all of you. Love - Mom


Lily Kay Monkey

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