As the Princess sleeps, I sit here anxiously awaiting our release! I ran to the pharmacy this morning for a fresh batch of Amoxicillan, as ours expired while we've been cooped up here. After that I ran to the grocery store and bought a bunch of stuff to get us through the week with minimal need to take our show out on the road on TPN. Then, I picked up Maddux who cried and cried and was so excited to go home, he tried to jump into the back of the truck like he was only one year old, and not the arthritic, almost six year old man that he really is. It scared me, fearing he hurt himself. So, we're all set at home for Andi's big return. We're just waiting for her to get off this TPN batch, and then we can go home!
TPN is different than getting food in your stomach. Oh no, you just can't shut it off. The last hour they cut the rate in half, and sort of 'ween' you off of the margaritas. Otherwise, it's a massive sugar crash and can be pretty bad for you. So, it's not like we can easily just pick up and go anywhere while she's on this. Moving her around while tethered to something is generally against my better judgement. That's how things get pulled out, in my experience. One little hiccup, and we're in BIG trouble. So, my plan is to lay low this week and get caught up on our rest and work. It should be a great week for that.
We are going to participate in Light The Night, a benefit and awareness campaign for Leukemia and Lymphoma Society on Saturday night. We'll likely have to tether up to TPN before we finish the evening, but, I figure by then I should be an old pro at the process, and maybe won't be so afraid.
So, this Friday, we're coming back here to have a Flouroscopy. Basically, they're going to put some goo in Andi's stomach and watch it work on xrays... and make sure everything is looking & working well. Again, if all that looks okay, then we get the green light to start giving her small amt's of food through the new g-tube that weekend. On Monday, a week from today, we will begin transitioning off the TPN and onto g-tube feeds. On Thursday, we're due back here at the hospital (clinic) and they are going to remove the central line from her shoulder. THEN... it's back to normal. Well, our normal, which is currently g-tube feeds. I'm going to give her a few days with the new g-tube site learning to love her Neocate cocktail, and then we're going to begin working on oral feeds again. They are anticipating she'll gain at least 1 oz a day on TPN. And to answer Miss Em's questions, we haven't weighed her since this last surgery, mainly because she retains so much fluid after surgery. They also don't seem to be too worried about it, knowing that this TPN is going to help. All I know is that I've been back for several hours and lil' Miss snoozefest is still snoring. I really wish she'd communicate to me when she feels like taking long naps, so I can power-down with her. Since I didn't get the memo, I went to Starbucks for a refill. Well, talking about it awoke the Bean, who is now beating the heck out of her massive monkey balloon and having a grand ol' time! We're all packed up and just waiting to be freed. I keep making jokes that we'll likely get escorted out of here, due to my antics the other night. I've already decided that we're going a different route out of the building than we did the previous four times. Yes, we've dwindled down to superstition, hoping this is the last time we're coming here to stay. Visiting is one thing, living here is another. I guess I should stop be so self involved and send out positive thoughts for all the kids that will be staying longer. I know what it's like, therefore, I think we'll simply leave quietly and humbly, thankful that we can. Then maybe we'll have a small dance party USA at home tonight, our wild Friday night tradition. We'll take it. Just know, we're ready to go!
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