Mike was off last night and wanted to stay with Zoe and apparently they had a bad night.

First off, my daughter is a sneek. I’m aware of this. Everyone else it seems to underestimate her. She has a new found love of dental hygeine. She wants to brush her teeth 3 times a day but that’s only because she wants to drink a little of the water she rinses with. Gross? Desperate times call for desperate measures. Last night Mike said she would make herself cough until she spit something up and then requested water to rinse her mouth with. 1oz goes in and a 1/2oz got spit out. Because of that her fluid intake record is wrong. She’s more in the positive than her chart says she is and Dr. Boyle is not happy. She’s been banned from ice chips and brushing her teeth. She is getting 15cc of tea or juice every hour and that’s it. She’s being very closely monitored on both her intake and her outtake. Her liver is larger today than it has been and now her spleen is enlarged due to fluid back-up. Again, Dr. Boyle is not happy.

The enalrged liver is causing her to have some difficulty breathing. It’s taking up space usually reserved for lung only. She’s still on oxygen and they’re keeping a close eye on her. She’s been prone to fits since last night so her heart rate and pulse have spiked and are a little on the high side.

She was playing with her dolls this afternoon and got a case of the shakes. She wasn’t cold and said she couldn’t stop her arms from shaking. The Dr’s came in and listened to her and when she laid down it stopped and hasn’t happened again. Could have been a muscle spasm but no one is really sure. Zoe said she felt fine so that’s another thing that’s being watched.

She likes the smell of the alcohol pads, the bathing cloths and the adhesive remover pads (smell like oranges) so she seems to be calm when she has one of those items to her nose. We’ve got a steady supply to keep her happy.

She’s napping now and her heart rate is 146, bp is 91/52 and SPO2 is 100. She looks peaceful. On an unpleasant side note, she’s very thin and her heart is so large and working so hard that you can actually see her chest flutter with her heart beat. I’m keeping my fingers crossed that a new one comes soon. I think she’s hung in there long enough. It’s time life cut this little girl a break.

3 comments on “Overnight

  1. Sounds like something my daughter would have done at her age . My daughter is 18 now i couldn’t imagine going thur what you and your family are going thur Tessa my daughter had alot of stomach problem which seems like nothing when i heard about Zoe. It is definetly hard seeing you kids be that skinny and not being able to eat. I hope you hear some good news soon that poor little girl has suffered long enough and she doesn’t deserve to go thur this at such a young age. I can’t wait for your mom (dawn) to come in and tell us about Gabe and Zoe play at her house going for motorcycle rides or even the muddy buggy rides in their back yard. Chrissy i don’t know you very well but my heart goes out tyo you and your family stay strong for that little girl she needs someone strong and from what i’ve heard you are that person. Take care and give Zoe a hug for me, if you need anything you have my cell number

  2. Hey Zoe 🙂

    I work with your mom. Please know that I am praying for you.
    Your mom and I have such a good time at work that some days I think we should work for free….not really LOL.
    Since you are at the clinic take a peek out the window and draw what you see. I enjoy looking at your artwork on this website and would love to see some more..
    You are an awesome artist!!!

    Love and hugs,

  3. Chrissy, I love you guys and am praying for you day and night, I want to do whatever i can to help! am not sure where i can go to visit or the times, or if there is a day i can sit up there with zoe while you get some things done. anything you need just ask, and you don’t even have to ask nice! haha love ya like a sister, and am here for you when ever, even if youjust need someone to laugh with, or scream at!love ya elizabeth

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