Wednesday, April 18, 2012

Day 20...The darkness before the dawn...

Okay, so I'm starting to freak out a little. I admit it. I am not sleeping, not eating, and not for the first time in the past two and half to four years, depending on how far back you want to count. My blogs are becoming more and more disjointed, so apparently, I can no longer write, or even think straight. Sarah spent the night on oxygen and breathing treatments, and she continues to dry heave with no results, which causes back pain. I am hesitant to give her any more boluses because she can't breathe as it is, and more sedation is only going to make it worse. She has to sleep sitting up, with an oxygen mask just to be able to breathe, and for the first time, my daughter looks sick to me.

For the past two and a half years, I have known rationally and cognitively that my daughter is sick. She has cancer. That is the epitome of the word "sick". She has a life-threatening illness. Then contracted a secondary life-threatening illness. She is a very sick little girl by definition. But that's on paper. My life doesn't look like that, at least, it never did to me. To me, this is what I saw on a daily basis, at least, most days:



 So you can imagine that rationally, I know it could get so much worse; but in my mind, seeing my baby unconscious with a tube down her throat and a machine breathing for her is just more than I can bear.

Yeah. the doctors said that's a possibility if she continues to have labored breathing. That picture in my head alone is enough to set off the waterworks. Add to that the fact that they can't give me any real answers for what is wrong with her (don't get me wrong, they are doing their absolute best to find answers and to cover her in the meantime for any and all possibilities) and that as soon as I let my guard down something else goes wrong, and it's no wonder I'm a mess!

Luckily, she is now breathing stably on her own, without oxygen or breathing treatments, and while she is still vomiting, she is stable for now.

Today has been the most exhausting day. X-ray, CT scan, vomiting, withdrawals from the Fentanyl, which looks like a scene from Celebrity Rehab, only in my sweet innocent baby. She is literally crawling out of her skin, and there is nothing I can do but hold her and soothe her as best as I can. They are supplementing her with boluses of 10 mics every two hours, when she was on 16 mics every hour, so the boluses help to even her out, but they aren't enough. She is crying for them before they're even due, it is literally like watching an addict chase a high, only in my sweet baby girl. It is painful to watch. I got yelled at for not eating or getting enough sleep, but there just wasn't time today. How do I sit there with a mouthful of sammich when my daughter is writhing in agony on the bed, and all she wants is me? "Tone it down, kid, Momma needs her ham and cheese." After all that, the doctors still don't have any definitive answers, although they are leaning towards pneumonia based on her X-rays and CT scans. They have covered their bases for whatever with antibiotics and such, and they will continue to stay on top of it, repeating the X-ray tomorrow to see if there is any change. If she continues laboring to breathe, they will send her up to the PICU to sedate her, intubate her and put her on a ventilator. Her white cells are elevated, which means that somewhere in her body there is something to fight off, which in and of itself is alarming given her fragile state; but on the other hand, it means her new immune system is working, and that is a positive sign.

I am doing my best to hold it together, because when it seeps through, she ends up apologizing to me for her own pain, and I can't have that. All we can do is be thankful for the small blessings, SO much support from friends and family and even the staff (several nurses gave me the Mom face for not eating today), and the fact that she still has some fight left in her, even if it's directed at me. She can be mad at me as long as she stays, and the heartbreaking part of it is that she has been so good with everything they have asked of her. Breathing treatment? Sure, we're playing elephant with the hose. Lay on this conveyer belt with my arms above my head and lie PERFECTLY STILL at four years old? Sure. Can Castles come? (For those out of the loop, Castles is Sarah's best toy, the pink unicorn she has had since she was eight months old, and he has been here for the whole ride, every test, every scan, every procedure) He needs to put his arms up, too! (He totally did, I wish I had taken a picture!) Suck mucous out of my nose when I am dead tired? Okay, but I get to put in the saline. Change my diaper? EFF YOU, that's what Momma's for! I don't want her to sleep! (She literally said this last night, except for the eff you part)

She has been so good through all of this, and I am so proud of her. I am hoping and praying that tomorrow is a better day. As for now, I am going to forage for food and then try to get some sleep. Whatever tomorrow brings, I will be ready.

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