Monday we had to check her kidney function because of all her new diuretics. Everything looks great.
Thursday was our normal clinic visit. They had to poke her twice because one of her veins just couldn't give anymore blood.
She screamed more than ever before. She's getting more aware of what's going on.
We got to visit Dr. Jensen after labs. With her new bloodwork, her score went from 28 to 23. Boo.
But she continues to lose weight. She is now being tube fed 20 hours a day. No bueno.
She's not tolerating more than twelve ounces per feeding. Anymore than that and she throws up, so TPN may be in our future.
She has also lost interest in all bottle feeding and has thrown up the last couple times we've tried to feed her crackers. :(
I absolutely hate watching her getting skinnier!!
Her oxygen level is also different when she is sitting compared to laying. We might be doing a sleep study soon to see how labored her breathing is when she sleeps.
On the bright side, we got to travel together as a family to go watch Trey play in his last baseball tournament before school starts.
It was just an overnight trip, so it was short and sweet.
She did throw up at the ballpark, and pulled her NG tube out. That's always a good time to put that back in. But Bill and I make a good team.
Really I am just happy she's still able to go on trips with us and that we make the effort. The extra work is worth it and it does seem to take an extra day for her to catch up on her rest, but we are making family memories and that's important.
Today we had to take her back to the lab for more blood work before we have to update her score tomorrow.
Hopefully, it won't go down as much. Our doc thinks it was such a big drop because she received so much IV fluids in the hospital last week.
Crossing our fingers that her numbers are worse--how messed up is that?!?
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