Sunny Days

  5% chance of survival looks good on this 5 MONTH OLD!? She's doing much , much better this week! She's far more content, and is closer to herself. This week, she finished up her round of antibiotics to fight off the infection in her gut. Her G-Tube is still healing - I think the cite got a little wonky from her belly swelling with the infection, so they placed a ND tube for starting meds/feeds. Previously, she had a NG tube which went through the nostril into her stomach. The ND tube follows a similar route, but goes a tad further just into the small intestine. The General Surgery team wanted to give her belly & stomach more time to heal, so this tube allows food & meds into her system while bypassing her stomach.  Monday morning, Dr Stout commented on how big Sunny was, "...usually we can grow babies wide, but she's growing LONG too!?"  I don't know if it was the position she was laying in, but two more providers came in throughout the day and also ...

  Sunny continues to follow her "you think that's  what I'm gonna do? HAHAHAHAHAHAHAHA" brand. She lives her life how she sees fit, and it's not often what everyone around her expects, or wants usually.  Following her g-tube procedure Friday, Sunny recovered & spent the night with her friends in the CICU. Then, Saturday afternoon, she made her way back over to 2B to continue healing. Things looked normal, and she spent some quality time with her Papa as I journeyed to join my family for my Dads birthday dinner. Sunday, Chris walked in to see a big-bellied Sunny. The nurse said Sunny had a puke-y night, and her heart & respiratory rates were resting higher than her norm. She didn't seem agitated, just bloated and not herself. The team took some x-rays, which showed air in a couple of places. There was some loose in her abdomen, which apparently is normal after a procedure; your body usually absorbs it and gets it out. But then there was air in the linin...

   Baby girl is getting a G-tube today!!       We've been waiting on this for a whiiiiiiiile - the first time we were in 2B, we were gearing up for the G-tube when they found the decreased heart function. That's when they pumped the brakes on that procedure, & investigated heart things back in the CICU. We're excited for Sunny to be free of another face tube, and no longer need to be put in "hand jail" socks to keep her fingers from pulling her NG-tube out.      The G-Tube procedure  was  supposed to be on Monday, but last Thursday, they discovered she had a UTI & bacteria in her trach, so they put her on antibiotics for the weekend. Then, as she finished that up, they were noticing flecks of blood in her stool. After two rounds of x-rays & ultrasounds, they ruled some things out, and decided it was most likely her gut flora getting upset by the antibiotics and causing inflammation. The GI doctors were asked to give inpu...

      Sunny has been reunited with her beloved baths! She was getting a weekly bath on Fridays the last time we were in 2B, but then went without for about a month in the CICU. Sunny was having a rough  & fussy Tuesday morning, so OT Jackie came in with some bath supplies to help. Sunny went from crying, to falling asleep in the tub. After getting settled back into bed, she took a really goooooood nap.  Other than the bath, this week has been relatively uneventful. They went down on some meds & her sodium supplement.  Primarily, we're still waiting on General Surgery about when would work for them for G-Tube. Once they tell the team here, the Cardiac Anesthesia team has to then find what coordinates with with their schedule....so. it's a real speedy process. Yesterday, Sunny's heart rate was more elevated than her usual. The cardiologist on service this week called for some blood tests, an x-ray, and a urine test to try and figure out why. Other tha...