A blog that I only half-finished from Friday, posting now...
Okay, so today was shaping up to be a good day...emphasis on the word "was"...
She was good all the way up until I'm getting ready to put her to bed, and then she starts up with her usual antics. She wants a snack. She has to pee. She wants to skip her bath. She's scared of the dark, when there is a huge ass night light staring her in the face. She can't sleep without a pile of about four thousand dolls surrounding her. Then, when this child has worn thin my nearly infinite patience, I cut her off. No more antics, just go to sleep. Then the real fun begins. Then the tantrums start. Every. Single. Night.
Tonight started out just like usual, except for the part where she pulled her lines out twice within an hour, and the nurse had to change out all of her tubing, and I had bathe her again to wash off all of the blood. Then, once I had her clean and ready for bed, she started throwing a fit because I refused to let her watch another movie, and I noticed blood starting to seep through her pajamas, in the center of her chest, where her broviac tubes are. Now, the broviac lumens hang out of her chest, so seeing that blood made me really nervous. Thank God that when I checked, I discovered that it was coming from her port needle tube, which had cracked. So another bloody mess to clean, another bath, and her port needed to be reaccessed, but there was no time for LMX cream (this numbs the pain but takes half an hour to an hour to take effect) because it takes forever and the port needed to be reaccessed right away. So the nurse gathered what she needed, including witnesses, because they don't usually deal with ports back here in OICU.
Now, the porta-cath is a catheter that lies underneath her skin and goes directly to her heart. It is accessed with a needle that works sort of like a pincushion or a dart board.
Usually, the LMX cream would numb the site so that she would feel minimal pain, which I am ever so grateful for, because she was allergic to the EMLA cream they used before that, and so they just kind of had to go in cold turkey and she has spent the last two and a half years just getting a needle poked into her skin. But like I said, this time, there was no time because they couldn't flush her catheter because it had a hole in it, so it had to be reaccessed with a new needle right away. So they, went old school on Sarah, took out the old needle, used the cold spray that she HATES, which also has a numbing effect but stings in the process, and the new needle went in. Now Sarah's porta-cath is tiny, about the size of a small pill, and it wiggles from two and a half years of being poked, so if you don't get it just right, it won't draw, meaning you can't get anything out or put anything in, so guess what happened? Mind you, the nurse is relatively new, works OICU so she doesn't do a lot of porta-caths, and was already frazzled from the previous events of the evening, and there is another nurse and another resident watching her. She puts the needle in, and it won't draw. So she takes it back out, and puts it back in. Still won't draw. They get another needle, switch nurses (the other nurse usually works the main oncology floor where they see ports all the time) and this time they get it, but my poor baby has been poked three times and is none too happy that she had to be held down this whole time.
Then another tantrum ensues because she still doesn't want to go to bed, even though she's even more exhausted than she was before from all the crying she's been doing. This was the mother of all fits. She's not only crying, she's screaming, she's thrashing, she's hitting herself, the bed, and anyone who gets near her, she's throwing things. Finally, my seemingly infinite patience has worn down, and I called her father for reinforcements. I was seriously ready to take his car the minute her got here, and go home for a much needed mental break. I couldn't take it anymore. She had been screaming at me non-stop, and everything was a fight. I called him, told him he needed to get here NOW, and she starts freaking out because I called him, so she bit me. Yeah.
When I hung up the phone, I turned around and started scrubbing the blood out of two pairs of pajamas. She asked me where I was going. I told her I needed a break, that I was going home. She asked when I was coming back, I told her I didn't know. She starts crying, says she's going to miss me. I soften a little, but I am too angry to answer her. She starts crying ans says that she doesn't want me to leave, and I tell her that I don't want to leave but that I need a break, that this entire process relies on her cooperation, and that if she won't listen to me, then I need to call in someone she will listen to. She whines and bluntly points out that she doesn't listen to Daddy, either. Had I been less angry and frustrated, I probably would have laughed. Instead, I stayed quiet. She quietly asked if I would be back Sunday. I told her that I would, and she said, "Okay. Goodbye, Momma." Insert heartbreak here.
I rinsed out the pajamas, and picked her up, because she had started crying and was reaching for me. I held her tight, and she started sobbing, and telling me she didn't want me to leave. I told her that I would stay if she would promise to be a good girl, and she told me I was the best Momma in the whole world. :'( I told her that it doesn't feel like it sometimes, especially when she acts this way, because if I was a good Momma then she wouldn't, and she said that I was, that she didn't know why she was acting this way.
Of course, by the time he gets here, she was out, but I was still so grateful that he came because I was still a mess. Just seeing him made me feel instantly better and worse at the same time. I felt so bad for making her cry, for making her feel badly, and at the same time, what kind of mother would I be if I didn't nip this behavior in the bud as it happens? Then, what I told her was the truth. I honestly feel that if I was a better mother she wouldn't behave this way. While my husband is consoling me, making me laugh, offering me food, rubbing my back, the nurse comes back in to hang her chemo, and she tells me that I did an amazing job, and that it could just be a reaction to the hydrocortisone, which is a steroid, so it can cause the 'Roid Rage, but because she was only getting a small dose it was just enough to blur the line between 'Roid Rage and Spoiled Brat. I felt relieved and even worse at the same time. At least now we had a cause for her erratic behavior, and I could take the old priest and the young priest off my speed dial. Then I started thinking about how hard I had been on her, when at least half of it hadn't been her fault at all.
But "Knowing is Half the Battle" as GI Joe used to say, and the next night was better because I could deal with her the same way I always do when she's on steroids. She still fought going down, but I picked my battles with her and it wasn't too bad.
So, what have I learned? I am not Super Woman. It's okay to ask for help. Sometimes, it's downright necessary. I learned that my daughter's love for me is as boundless as my love for her. That we can love each other through anything, even when we act crazy. Most importantly, I have learned that I am way harder on myself than other people seem to be. I even had a nurse the next night compliment me on how I had handled the situation, saying that she would have gone crazy way before I did. Maybe the lesson here is not only to go easier on my daughter, but on myself as well.