A Much Better Day

Sorry for the late update. I just had a surprise visit from my friend Wyndi. Her daughter has some medical issues too. We met in the hospital during a surgery and have kept in touch over the past 2 1/2 years. It's SO great to actually have a friend locally that knows what it's like to go through this. She is so sweet, brought me instant Starbucks packets so I'll never be without coffee again. I can't wait to try them with the scones and chocolate that she brought. Thank you Wyndi.

Last night we positioned Ainsley on her stomach and she was able to sleep most of the night. I won't say comfortably, but at least well enough that she wasn't crying. Because she was on her stomach she didn't have the constant secretions so luckily I didn't have to get up to suction her all night long. That means I got sleep, glorious sleep! What a difference that makes. After rounds I was able to squeeze in a shower and get to the cafeteria for breakfast before they closed. I got my coffee. So life is much much better today.

Luckily we were assigned a private room. I think I forgot to mention that. For those who're fortunate enough to have never stayed the night with their child at the hospital that is great because it means less people in and out of the room. More privacy which is great, especially when your child's naked bum is up in the air while you fix up the cast with moleskin. Less noise so your child can rest (or fuss without disturbing anyone). And best of all you don't have to go out in the hallway to pee at 4am. (If there is a child using the bathroom then parents aren't allowed to use it.)

They were talking discharge this afternoon. It seemed a little soon to me. She's fussy. She doesn't like being here. Understandably she doesn't like the cast. It makes it hard to know if her pain is being adequately managed. Although I think if it isn't enough they'll just increase her dose of Oxycodone. She'll also come home with muscle relaxants to help prevent muscle spasms which are quite painful.

She got her cast cut down around the g-tube and at the rib area so it isn't too tight. She was so brave while the doctor cut it with his special saw (it can't cut skin, just the cast). So that's one thing done.

We are working on returning her to a normal feeding schedule and she just received her first 8oz feeding.  They are transitioning her to oral pain meds and will pull the epidural today. (I know after all those IV pokes! Insert eyeroll!) The  last things is they are working on getting her equipment. A tilting wheelchair and a special carseat. Of course those things weren't ordered like they should have been so it looks like we'll be waiting on them. I don't really mind. Looks like we'll be going home tomorrow.