Tuesday, April 17, 2012

Day 19...Bloody Tuesday...

Okay, so Miss Boots woke up pretty much every hour on the hour last night with night terrors and pain. I'm almost positive the night terrors were brought on by Nurse Pushy, who is so ridiculously by the book that she seems to have lost her bedside manner completely. Is it really necessary to wake her from a sound sleep to weight her? I mean, really? I know it has to be done every shift, but is it necessary to make her uncomfortable to do it? And then, once you have her awake, to harangue her about the two meds she hasn't taken, which I wasn't going to bug her about because they're not crucial medications? I mean, I could be wrong, but when you have a nurse like this, and your child wakes up every hour screaming, "No! Go away! Leave me alone!", there may just be a connection. Just sayin'...

 So, at 5 am, Sarah wakes up, complaining of pain and asking for a movie and for me to lay down with her, which I did in the interest of possibly getting some sort of sleep. Imagine my chagrin when the child proceeds to vomit all over me, herself, and the bed with no warning. Sarah is not usually one to throw up, never has been. Even during two and a half years of chemo for her ALL treatment, she threw up maybe twice. I could tell she was nauseous if she refused to eat, but this child is not one to have a tender tummy.  But AML is a whole different ballgame. WAY stronger chemo means WAY stronger reactions, and they same ol' tried-and-true meds just aren't cutting it anymore. So now, she's an up-chucker. Fine,I can deal with it, but usually, she'll give some sort of a warning, either she'll cough first if she doesn't see it coming, or if she does, she'll flat out say she has to throw up. One minute, she is stroking my cheek, the next, she is vomiting everywhere, and there's blood clots in it. BLOOD CLOTS. One of the warning signs I'm supposed to be watching out for.

Long story short, the doctors decide to take x-rays of her chest and abdomen, and don't really find anything. They transfuse platelets, they want to start antibiotics and have to re-access her port. They have to put her on oxygen and give her an Albuterol breathing treatment because she is not getting enough oxygen. It has been a long day.

The only highlight was when her little "boyfriend", Julian, came to visit. Julian is a fellow cancer patient here at CHOC, and together they are the cutest thing ever. They are inseparable when they are together, they don't ever want to leave each other. Julian has not been feeling well, either, so I know that the visit did them both a lot of good. The best Sarah has felt all day was when Julian was here, and I am so grateful that his mother decided to bring him in spite of the fact that Sarah wasn't feeling well, because she would have spent the remainder of her day feeling miserable if he hadn't come. It has been a long day, I am EXHAUSTED (even more than usual) and a picture is worth a thousand words, so here:

This was taken as he was about to leave, which made Sarah super sad. :(

It totally made up for all of the crap that she went through today. For all that, we still don't have any answers, although the doctors and nurses are doing the best they can, and all we can do is have faith and pray. Which is total crap from a mother's perspective because I want to do something. But there is nothing for me to do but wait and see, and try to make her as comfortable and as happy as I can. Maybe tomorrow there will be answers. Today, there is fear, and frustration and self-doubt, and so much love. But mostly love. We can start there.

No comments:

Post a Comment