Our new life
This is our new life. Or maybe its our old life? Somehow it all seems strangely familiar to me. Its like we've been here before. Like the year before transplant? When all that sustained our sweet baby was an IV pole with bags of fluids connected to a catheter that was inserted into a major vessel that lead to her heart. Yep, when I think about it we have lived this life before.
See that little bag(ok, thats not really true its the LARGEST one she's ever had) of yellow fluid? That's her TPN(it stands for Total Parenteral Nutrition). This is what is sustaining her while she is sick and unable to be fed. See the bag of clear fluid? That's her IV fluids that keep her from becoming dehydrated while she stools out in her ostomy bag. See that lump in the chair? Thats our tiny pickle. The gherkin. This is pretty much the way she looks for most of the day. She's worn out. I'm not sure from what. Maybe all the coughing? Our best guess is that she is still battling the RSV. Thankfully her oxygen is not being compromised and her lungs are clear. What a tremendous blessing that is!
We plan on keeping her on full TPN through the weekend and beginning feeds again (slowly) on Monday. We attempted some PT yesterday, but it didn't go that well. She did stand up 3 times, but they were short and shaky. She tried and thats all we can ask of her. We will try again tomorrow. Hopefully she'll start to turn around pretty soon. I miss her silly self. Her smiley, happy self. Those parts of her have been absent for so long. I can't wait to watch it come back.
Outside of Ash being so ill life is pretty good. We have lots going on this week with baseball practices, batting practice, a tryout(this afternoon) to play for the school, soccer practice, a girls trip this weekend to celebrate Allison Brooke's 11th birthday, an afternoon of surprises in store for her tomorrow, an out of town conference for Dave over the weekend, and then all the normal stuff we do each week. We are super excited because the Tarheels play in their season opener next weekend and Allison's soccer season begins as well.
Grandma is on her way home from an out of town trip to stay with Ashley Kate for us on Saturday as we leave to celebrate with Allie. I'm a little nervous because of the whole TPN issue, but its just a day trip and I'm sure with a little instruction they will do fine. I really hope she is feeling a little better by Saturday. Its always hard for me to leave her behind. I don't leave town very often without her and especially not when she's sick.
Well, thats pretty much whats going on in our little yellow house this week. One sick pickle, a very busy baseball player, and an almost 11 year old beauty anticipating her big surprise. Life is good. We are truly blessed, and Dave just walked in for lunch. Guess I better be going. Have a great day. Trish