Life has been busy - I keep sitting down to write an update and other 'things' keep distracting me from finishing :) So please excuse the way this reads as being written earlier in the week - it was!
Audrina is now 4 days out from surgery and she's doing well in some regards and struggling in others. We were able to come home Thursday evening, and everything was going well. Her pain was awful on Wednesday - we saw dramatic improvement by Thursday at lunchtime.
She is like a different baby..... she never cries anymore. All the hours she was screaming? Completely gone. We aren't sure what changed but she is about a million times happier than she's ever been before. She even started babbling 'da-da-da-da-ahhhhh-da" this week! We were all in shock at how perfectly she came through the surgery... no complications at all. For once, everything was going according to plan!
Friday, she started to get more distension around her tube and I began to get a little nervous that she wasn't passing stool. With her already crappy (pun not intended!) ability to move her bowels, I knew anesthesia and abdominal surgery could definitely slow things down. She had been tolerating her feedings pretty well, but around Friday afternoon, she started throwing up. We checked to see how much residual feedings were left in her belly and her feedings were starting to back up.
Then all of the sudden she spiked a high fever Friday night. :( We were worried about surgery infection but her tube site looked great. I called the surgeon on call (who happened to be HER surgeon - what luck!) and he said to bring her in if she got any worse but otherwise stay on top of her tylenol, etc. In trying to triage it myself to decide if it was ER-worthy or not, I ran a urine dipstick which looked very positive for infection. Glad it was 'just' a UTI, I waited til morning to call our Pediatricians office, who squeezed her in with another doctor. Wouldn't you know, her mystery fever broke and her urine was totally clear the next day. Whatever - I am just glad she's not getting sick.
Unfortunately, as of today (Tuesday) she's still vomiting 1-2 times a day from not tolerating her feedings. I guess we just have to keep playing around with the dosing on the feeds to figure out what makes her belly happy. The other thought is that we need to buckle down and get in a better routine with her stooling patterns, its probably hard to have a happy belly when you have a colon full of poop. We started back up with light physical therapy today and we are still noticing right-sided weakness but her tone doesn't 'feel' uneven to her PT so we are going to just keep watching it for now. I'm not really too worried about it since she is able to use the right hand pretty well.
Excited to end this post with good news - we got a call from Miracle Flights for Kids last night. They are able to provide our flights to and from Atlanta. That is one huge stress off our shoulders for our trip. We've had some significant bills over the past couple of weeks ... $1000 dental bill, $1100 car repair, $600 car repair...yikes. And we still need to find a hotel and rent a car. So I cant say enough what a blessing this is to us! A huge thank you to Miracle Flights for making this trip a little easier for an already stressed-out family.