Ruby had a quiet day yesterday, but a bumpy night. She had three episodes where her blood's oxygen saturation dipped below 50% on the monitor and they had to hand-bag her to force more air into her lungs. They think that her left lung has expanded more and her right lung has collapsed a bit. There's also some extra fluid on her left side where she doesn't have a chest tube that could be shifting everything around. For right now, her oxygen saturation is hovering around 70-90%, so they increased the oxygen level in the air she's breathing from last night's 30% to 100% right now. During rounds this morning, they decided that it's mostly a mechanical issue due to all th organs and fluid shifting around, so the nurse rolled her onto her left side so things will shift back and give her right lung more room. She gained a little bit of fluid weight last night, so they're going to start her Lasix diuretic again. They don't seem very sure at the moment how much her pulmonary hypertension is playing into the situation.
Our biggest fear right now is the PPHN (persistent pulmonary hypertension -- I have no idea where the N comes from). For some reason, the blood vessles in the lungs of CDH babies sometimes constrict very easily, which causes high blood pressure between the heart and lungs. It's the reason that she went on ECMO in the first place. But ECMO basically just buys time in the hope that it goes away on its own. Shes' already on the main treatments for PPHN, oxygen, mechanical ventilation, and inhaled nitric oxide. So we're scared that if it becomes acute that we've already fired all our big guns. But maybe there's more that could be done if it gets worse. The cardiologist is comming by in a little bit, and not just any cardiologist. From what we understand, he's one of the top experts on PPHN in babies. That's one of the reasons we came to CHOP -- if Ruby had any additional complications, they already have experts here for whatever she could throw at us.
We're feeling a little discouraged by this setback. Intellectually, we know to expect setbacks, but after 2 good days with steps forward, we've been really dreading the expected steps back. Ruby is still very sick and we expect there to be more days like this. We just don't like it when we have them.
On the positive side, her blood gasses are still very good. So when they directly measure the amount of oxygen and other things in a sample of her blood, it's within the acceptable range. She's nowhere near how bad she was when she had to go on ECMO. Her lungs are doing a great job. I keep reminding Holly of that. And she pooped a little, which is an excellent sign that all her plumbing is open and ready for business. So if we can get her past this bump in the road, she's very close to being able to start taking a little milk through her stomach tube. That's how she will have to eat until the ETT (breathing tube) comes out.
So there is definite progress in some areas, and some expected setbacks in others. But if you're expecting it, is it really a setback?
Hang in there. That's all I
Hang in there. That's all I can say, is hang in there. The ups and downs just keep coming but from what I'm reading here, Ruby is really doing GREAT. I will be hoping that the PPHN resolves, she just needs some time. (An aside, the "N" is newborn--persistent pulmonary hypertension of the newborn).
Jana Lewallen
Praying that tonight is a
Praying that tonight is a quiet night for Ruby!
Karla
Braden's Mom
It's to be hard to handle
It's to be hard to handle the one step back after two HUGE steps forward. She's a tough one, that Ruby. Like Tami said, she's already handled so much that life has thrown at her. And having the best of the best to take care of her is such a great thing. Love and hugs from IA
Hopefully this is a short
Hopefully this is a short setback, and Ruby will go back to the "honeymoon" state again... I'll keep her in my prayers. Don't get down - she's to feisty for that!
Lil Texan can't stop it with
Lil Texan can't stop it with the two-step... someone needs to teach her how to country waltz, or even a slow blues shuffle instead.
Only a setback if unexpected.
Keep fighting the good fight, yall.
I'm liking how the nurse
I'm liking how the nurse knows that Ruby just wanted to be laying on her side (also certain it is not as simple as that)....hope that a change in position, meds, and the other measures get Ruby more stable, with fewer bumps in the road. Hang in there Holly and Chris.
Love from Houston,
Marie
We are so sorry to hear that
We are so sorry to hear that Ruby had a bumpy night but it's great that her blood gases are good. Alina had a lot of ups and downs after surgery and at one point her lungs even collapsed. I know it's easier said than done- I was in tears a lot- but don't get discouraged. It's just part of the CDH rollercoaster. You will see, Ruby will pick herself up, she just needs some time to heal. She's just been through a major operation and she is probably wondering what is going on. You have a very strong girl, she is a fighter and we are all praying for her speedy recovery.
Big hug from the UK.
I am praying for her,
I am praying for her, everyday!
2 steps forward 1 step back
2 steps forward 1 step back is better than 2 steps forward, 3 steps back. As I've learned over the last year, things take time and patience.
Hang in there! The docs know what they are doing!
We still have the positive thoughts flowing!
Sounds like it was a bit of
Sounds like it was a bit of a rough night. Those bumps have GOT to be hard when you've had two really good days of progress...try to remember that she's so feisty and loves you both so much. Her little body has been through so much in her 5 weeks with you...especially in the last few days. She's a fighter, and she's hanging tough. I'm sending PPHN GO AWAY thoughts and vibes to you three, and looking forward to hearing about more progress.
(((HUGS))) and love from St. Louis-
Tami, Chuck, and Aisling
asei uase ;i That is one
asei uase ;i
That is one message from a six month old friend of Ruby's. I think it means HANG IN THERE!
We are praying for you every
We are praying for you every morning, meal and night. We have our two year old praying for Ruby and our six year old praying for you and Ruby. Last night Olivia (6 years old) prayed that Ruby could relax and get a good night's sleep with no bad dreams. Our 6 month old had a one week stay in a NICU for a heart condition and every day I see answered prayers. You too must be able to see them in Ruby. Just remember God is better than any Gortek patch and has great plans for Miss Ruby.
Now we will pray that the
Now we will pray that the PPHN will be resolved soon. We will also pray for you and Holly...for endurance and comfort and wisdom. You are devoted and loving parents, doing all you can for your precious daughter. We admire you and commend you. Hang in there! "By day the LORD commands his steadfast love, and at night his song is with me, a prayer to the God of my life."
Ruby the Hurdler: Maybe
Ruby the Hurdler: Maybe just another Hurdle for Rudy to jump over..... remember mile three.... four... five.... It is a long race
thinkin about that baby girl!
We're thinking of all of you
We're thinking of all of you and praying for Ruby.
Love, Kate & Matt
Thinking of you all. Ruby is
Thinking of you all. Ruby is an amazing little girl!