My beautiful niece Gracie was recently diagnosed with Neuroblastoma (cancer). It is still early in the diagnosis and we are awaiting results to know more about the fight that Gracie will face. I've created this blog as an outlet for friends and family to stay informed about her journey and a way for friends and family to make anonymous contributions towards her care and the mounting expenses her family will face. Gracie is a fighter and the bravest 3 year old I know. Hundreds of people love you Gracie and are praying for you. "Be strong and of good courage for the Lord thy God is with thee" Joshua 1:9

Saturday, January 29, 2011

A week delay

We got to Ft worth around 9 pm Sunday night and she was happy and silly. She started complaining that her tummy hurt around 6:30 am and got some lortab. About an hour later, she puked and had a temperature of 105.5 and was saying she hurt all over. I thought, oh great she probably has the flu from going to church yesterday. Then they took her blood pressure and it was low and I knew it was another round with sepsis. They tested for flu and it came back negative, at that point I was wishing it WAs the flu, that would be better than sepsis. Especially sepsis like last month. No thank you! I was really nervous, since she was so bad last time. They tried giving her albumin and a lot of fluid but it didn't help with the bp. So they transferred her to the PICU once again. Brandon was working that day but he drove down after he got off at midnight and made it here about 430. I was so glad to see him.
They started her on dopamine and it took about all day to get the blood pressure up but then she was doing pretty well and didn't have the issues like last time. She went back to the regular floor on Wednesday and has been doing pretty well since then. We will go ahead and start the IL-2 next Monday. So now everything is just pushed back a week. as of today she is great. Eating fairly well and tolerating her feeds well. Brandon drove back home today for work but we were so glad he could be with us this week. I was especially glad that he was here to stick up for me when they implied I might have something wrong with the way I clean and change her dressing. As if I'm responsible for these sepsis's. I am sure they were asking just as a precaution but I was pretty offended and he let them know that we are far more concerned and careful about her lines than anyone. (obviously) he said I probably do a better job than most nurses. I was so happy to have him there, cause I could try and tell them that I know what I'm doing but they might not have been so convinced without him and knowing that he is knowledgable on all of it and sterile procedures. He is my hero :)
The bacteria is enterobacter which was what she had the first time. It was first cultured in her urine. It was also cultured in her urine last month when she had the pseudamonas. It has never fully cleared and we don't know it if is from her dead kidney or what the deal is but it has never cleared the urine, which then goes to the blood and she gets septic. When we go home she will stay on antibiotics to help that. Hopefully that will help and we won't keep running into this problem.
Thanks as always for your continued prayers!

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