EDIT: I took this picture this morning. Clara had thrown up some bile a couple of times already, and we were just about to get her chemo that we KNOW will make her extremely nauseous.
It is also the one that is dangerous for the bladder. So, they have doubled the amount of IV fluids she is getting ( to 25 mL/hr) to ensure she pees plenty and flushes the chemo out of her bladder. Since I am required to change her diaper every 2 hours, I bought her a couple of t-shirts so that tonight she can go "bottomless." I hope it will make diaper changing easier. However, during the day she looks awfully "big girl" in a t-shirt and pants.
This is also the last picture I have before she had her NG pulled today. (We didn't pull it yesterday because of the nurse continuing to confuse things by pushing her personal agenda to keep it in. She said the drs said we shouldn't - so we left it in...but this morning, they were wondering why it hadn't been pulled. I was not a happy camper after all this "miscommunication.")
5 comments:
LOVE it when they sleep with arms up! SO cute! Hope it is a peaceful weekend for you all! Hugs - shelly
We are very confused --- we thought she was not going to get any nutrition or fluids IV all weekend. I.e., we thought they were starving her.
And what is with this nurse? Doesn't she known the chemo makes the NG uncomfortable for Clara and is a possible source of infection? I really feel sorry for kids whose parents aren't as informed and willing to challenge the nurses as you two.
I know. It is confusing. There are so many things that are contradictory. It is amazing they are able to sort it all out and identify the cause of "side effects" and which drug did what vs her body not responding to things well.
In an attempt to clarify, this chemo can cause her to hold on to fluids and become fluid overloaded (which is what sent us to the PICU the first time for dialysis to remove the fluid). BUT, they also MUST flush her bladder as quickly as possible to make sure the chemo doesn't stay in the bladder too long as that is where it does the most common serious damage.
So it is quite the dilemma and requires constant monitoring and balancing. So the reason they don't want to give her too many unnecessary (food is considered unnecessary since she is expected to be so extremely nauseous) fluids is because she could end up retaining them at dangerous levels.
I love this picture! She is so adorable--with her little bows on her shirt and her polka-dots and her little shoes.
That last comment was from Melissa K. My daughter was signed in to her Google account, so it listed my comment as coming from her. Sorry about that.
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