Well, the tube count is up -- Ruby had to have an IV put in tonight.
The repair incision is still inflamed and they did the ultrasound today and there was indeed a small pocket of fluid in there. They are doing a CT scan tomorrow to see exactly how big the fluid pocket is and whether it's just a little infection at the surface or if it's something more extensive. They started her on vancomycin and gentamicin, which should cover all the bases for any sort of infection it might be. We're hoping it's just a localized infection, rather than something systemic or sepsis. The Vanco and Gen will kill just about anything it could be, so even if it is something bad, we've already started the treatment. We'll know more tomorrow after the CT. We're worried, but this is far from the worst thing we've dealt with.
Ruby, on the other hand, isn't worried at all. In fact, she was downright cheerful today. She took 25ml with me from the bottle, and then 32ml and 30ml from mom. They weaned her Versed down to 0.2ml and her morphine is still at 0.4ml, but she's was very comfortable with the Versed wean today. Last night she slept soundly from 11pm to about 6am and she was happy and alert much of the day today. They increased her feeding volume to 70ml every 3 hours, but tonight her reflux seemed a little worse. Over the weekend, they switched her Zantac to Prolosec, which seems to be making her reflux better overall.
Ruby and I had a great Father's Day. To celebrate, I replaced her NG tube by myself for the first time. She wasn't quite as excited about it as I was. It went well and you can see my handywork with the duoderm and tegaderm tape below. After our pajama party, we went to the Fetal Surgery Center Reunion. Ruby couldn't make it this year, but maybe next year. We did, however, get to meet some other CDH kids that have graduate from CHOP. It was so encouraging to see other CDH kids and even kids who had been on ECMO, running around and playing just like any other kid.
Here was Ruby after this morning's 25ml bottle feeding, quite content and snuggly, sporting her new NG:
How great that you were able
How great that you were able to go to the reunion and see CHOP graduates! One day - before you know it - you'll be playing chase with little Ruby around the house, listening to her squeal and giggle with excitement!
I'll be praying Ruby kicks this infection very quickly!
Pam
That's great news about her
That's great news about her weaning and feedings. Here's to hoping that infection is gone in no time! xoxo Sarah
Ruby looks so cute! I'm
Ruby looks so cute! I'm hoping and praying that this infection is minor and will succumb quickly to the arsenal of antibiotics unleashed on it already. Looks like there's been a lot of knitting happening on Ruby's behalf.
Sorry to hear that the
Sorry to hear that the incision is inflamed still, with a pocket of fluid. Sounds like she's on the right antibiotics to vanquish whatever little infection might exist!
Yay for increased feedings, especially from mom! That's wonderful news, and means she is making more wonderful progress. And, its great that the Versed wean is going well. Hooray!
All our love from the 'Lou!
Tami, Chuck, Aisling, and William
Adorable! Hoping for
Adorable! Hoping for nothing but good news!
Praying for Miss
Praying for Miss Ruby!!
Thinking of you, Tracy Meats - mom to Ian
Wishing all of you much
Wishing all of you much peace this week, and to Ruby a steady recovery. Thank you for the pictures. She is such a lovely girl who clearly loves to snuggle with her mom and dad! Much love to each of you.
hoping the meds take care of
hoping the meds take care of the incision problem!
Ruby is getting so big and has come such a long way!
Keep up the good work Ruby, Chris, Holly & CHOP!
Isn't she just gorgeous! So
Isn't she just gorgeous!
So sorry to hear about the inflamed incision, we're keeping our fingers crossed that it's nothing serious.
It's great to hear about her feeding, she is doing really, really well. Hopefully the change in medication will also get her reflux under control.
We know what you mean about seeing other kids. When you are in hospital it's hard to imagine what normal life could be like. Don't worry, you will be home soon and Ruby will grow up to be beautiful little girl and will be just like any other normal child. And the good thing is that she won't remember a thing.
We are thinking about you and are looking forward to more good postings.
And by the way, we'd love to have you over when you come to Europe. It would be great to see Ruby and Alina running around and getting up to no good.
Big hugs.