Is it the new medication?
or...
Is it Audra?
Right now it's lunch time on Saturday and Audra has basically been asleep since going to bed Thursday night. And that was after a day full of naps Thursday. So...is it the new medication making Audra so sleepy...or is this just one of her typical zombie-like phases but more extreme...or is it something else completely. I've managed to get her up and keep her awake for 30 minutes a few times to offer her food, give her a shower or take her on walk around the unit...but then she falls right back to sleep! She really didn't eat anything yesterday or so far today. So glad she has that G-tube right now.
Can't even keep her eyes open for her beloved pizza and French fries !
Yesterday she got a special delivery from Aunt Kristy...
Yes...that's an 8 foot stuffed snake!!
Everyone here thinks it is quite the unusual gift, but there's an inside joke associated with it. Audra loves long stringy things...ribbon, shoe laces, tape, etc. One day last fall while we were outside doing yard work Sean found a baby gardener snake and Audra just loved it! She kept grabbing it and picking it up. She must have like the way it squirmed around similar to ribbon when she shakes it. Now we call her the snake whisperer.
The only plan from the doctors today was to wait out this over-sleepiness that Audra is having. They said they don't plan on making any adjustments to her medications until Monday. They would like to see if she cycles through this similarly to how she does at home or if it persists, in which case she will need a medication adjustment.
Today I noticed that Audra feels heavier than usual when I pick her up, and her skinny little toes seem thicker. Usually her toes don't touch each other and there is space in between each one. And when I gave her a shower I noticed that her legs felt "fuller" than normal. Now all of this is probably not noticeable to anyone else, but because Audra is so skinny it is easy for me to notice slight changes. The nurse weighed her and she was 18kg. Audra has been 16-16.5kg for the past year with no budging. She has NEVER been in the 17's. So for her to 18kg is ALOT. That means she has gained over 3 pounds since she was admitted 4 days ago...and that's with her not eating hardly anything yesterday or the day before. It just doesn't seem possible ?!
So maybe that will pass too, or maybe it's a new curveball she is throwing us. Either way it seems like we are on stand-by until Monday as far as making any changes or progress. With that I decided to head home for the night to see my other 3 kiddies for a bit and stock up on some more food and toiletries. During her admission last month was the very first time I ever left her alone in the hospital overnight. This time she is not sick and feeling terrible, so it makes it easier on my heart to go home briefly. And since she is spending 90% of each day asleep she may not even notice that I am gone!
Even when she's awake she looks sooo tired
Hi! My daughter was diagnosed with ZTTK in December of 2015. She was one of the original 7 diagnosed and included in the Baylor article. We have a community of families worldwide that have children who have been diagnosed on Facebook. We also have an email list of families of children with ZTTK. It's a really a great resource and group. If you'd like to join us, please let me know. My name is Tara Hackwelder, and my daughter Elizabeth (age 4 ) has ZTTK. My email is tbly1231@hotmail.com I hope to hear from
ReplyDeleteYou! Your daughter is beautiful!