Ruby had a rough day today. She gained 200g since yesterday -- nearly half a pound. This weight gain is due to fluid retention. Her urine output dropped significantly and she is very visibly swollen again. She slept most of the day and it was obvious that she is not feeling well. This morning during rounds, the doctor said that she could only assume at that point that this was all due to an infection, given the positive blood culture. However, later in the day the Infectious Disease department got back with results that seem to indicate otherwise. All subsequent cultures that have been taken have come back negative -- no bacteria. The one culture that was positive grew a bacteria called corynebacterium, but not the diptheria or "JK" group, which are more serious. The type of corynebacterium in the positive culture is commonly present on most people's skin and typically doesn't infect a person or cause sepsis. So the Infectious Disease doctors believe it was a contaminated specimen, and Ruby does NOT have an infection.
So we're basically back to the drawing board as to why Ruby is swelling up again. This is very frustrating. We were making such great progress and on Saturday she looked really great. But now we're heading in the wrong direction quickly. We're on day 14 of ECMO and every day, the tubes that make up the ECMO circuit are aging and wearing more. If any parts of it need to be replaced, Ruby will have to go through the inflamatory response again and likely will swell up even more. Also, every day she's on ECMO is another roll of the dice for complications, so we really want to get her off as soon as possible.
In a way, we were kind of hoping for an infection, since it has a very clear solution. But it would have meant having to stay on ECMO until we were 100% sure it was gone, which could have meant another 7-14 days. If we can just get the edema to go away, then we can start moving toward going off ECMO and having her repair surgery sooner than that.. So I'm hoping that not having an infection is a good thing. Maybe the extra days on ECMO will be exactly what she needs for her lungs to heal and be free from pulmonary hypertension.
Even though she was asleep most of the day, she would wake up enough to grab and hold onto our fingers. Holly read her Dr. Seuss's "Oh The Places You'll Go", which she does every day. Hearing our voices seems to make her content and sometimes even calms her down from a shunting fit. So the Ruby that we know and love so dearly is still there. She's just not feeling very well.
Now, for a few hours of sleep and then back to the NICU in time for early morning rounds again.
So sorry Ruby had a rough
So sorry Ruby had a rough day yesterday. Praying for pee today!!
I'm so sorry little Ruby
I'm so sorry little Ruby isn't feeling well. I will be praying hard for the edema to go down and for her to feel better.
Pam
To all of my Family in
To all of my Family in Philly. I know that each day brings new challenges, and that the continuation of prior issues are challenging enough to count as a new challenge. I know that this is all more challenging than I may ever comprehend. What I want you to know is How Proud I Am of Each of You. Keep meeting those challenges head on. Keep being there to read, or to hold a tiny precious hand. Keep talking to Ruby, and to each other, because there is an awful lot of power in knowing that you have someone else there with you on your journey.
Love to Each of you, My Family.
-B
So sorry to read that Ruby
So sorry to read that Ruby is not feeling well. We hope that she will continue to pee and get rid of that fluid so that she can be one step closer to surgery. We are praying for your little one.
Come on, Ruby! Pee!!!
Come on, Ruby! Pee!!! :)
Hoping for another boring day tomorrow...
Lots of love,
Missy and the boys
Hi Chris, Holly & Beautiful
Hi Chris, Holly & Beautiful Ruby Hope! We're praying for you guys and sending Ruby our strength and good thoughts. We send you all the strength to get through the tough days and relish in those "boring" days. We hope you get a good nights sleep tonight and that Ruby has lost her that weight again tomorrow. We're doing the biggest loser challenge in the office and tomorrow is our weigh in... we'll hope Ruby has a good weigh in too! Chris we missed you this weekend for a big GM push and I was thinking about you at 4:30am Saturday while reading a dev doc on what to do when the Datamart Refresh runs long... Having your baby in the NICU certainly must put your priorities in order. We're all pulling for Ruby and her continued good health and for both You and Holly, that the nights are restful and that your days are full of finger squeezes and a calm sleeping baby. We're praying that she is getting stronger and ready for her surgery. Take Care Ya'll.
Chris and Holly, I am so
Chris and Holly,
I am so sorry to hear that baby Ruby had such a bad day. I will continue praying that she will start to pee off the fluid soon. I know you dont know me but if there is anything I can do let me know. I will keep you in my thoughts. FIGHT hard Baby Ruby!!!!!
I'm so sorry she's not
I'm so sorry she's not feeling well again and that she's retaining fluid again. Maybe the new diuretic is taking some time to get fully going in her system. I'm really glad there's no infection, but I understand the wish that it was - something easily fixed with the possibility of faster repair of the CDH.
It's so hard when your little one doesn't feel good and all you can do is hold her hand. She clearly loves you both and is comforted by you both.
I'm hoping for a much much better day for you three tomorrow. Pee, Ruby, pee!!! (hugs and love)
Tami, Chuck, and Aisling
We're still thinking and
We're still thinking and praying for you guys. Hopefully Ruby will feel better soon.
Many hugs and love from STL,
Jenn
Holly and Chris, I am so
Holly and Chris, I am so sorry Ruby is having a bad day. I think it is good that she does not have an infection, but hopefully doctors can figure out why she is retaining fluid again. Praying for Ruby that she has a good day and will soon be able to tolerate the weaning from ECMO. Have they changed the ECMO circuit yet or did I miss that in a post? Fight Ruby fight...I hope and pray she has a better night and make somes progress in the right direction. Thinking of you both.
Hugs, Tracy - Ian's mom
Sorry she had a rough day
Sorry she had a rough day today. Hope she starts losing the weight again tomorrow...gets some peeing going on. We're all thinking about you guys and hoping little Ruby will be coming home to Texas soon.
- Gretchen Riggs
We are continuing to pray
We are continuing to pray for you guys! Many prayers that they figure out what is causing little Ruby to swell again. We will continue to pray for you guys! Let me know if there is anything else you all need!
Ashley