Zoe's latest ultrasound shows her heart is not as thick as it was pre-surgery! Ummmm. This is the best news you have received in a while. Believe me.
**Wait. In case you don't know what thickened heart is, its a congenital heart disease that happens...no one knows why or how or what to do with it.
One of the biggest reasons we chose the shunt is the doctors were concerned about Zoe's "severely" thickened heart.
Now read the first paragraph again.
Showing posts with label snowZoe. Show all posts
Showing posts with label snowZoe. Show all posts
Monday, December 01, 2008
tired
mom and dad are tired. and we might have another week of this ahead! zoe is (thankfully) getting a ton of rest. she certainly deserves it.
The Reason God Let Jen Sleep
I stayed up most of the night with Zoe. I told Jen I'd wake her at 3 but I really had no intention of doing that.
While Jen was upstairs, a little boy in the room across from us was called home. He's a little button, and doctors have been working on him intensely for hours and hours.
His mom experienced the anguish you can never imagine. She mourned her son's loss, calling out "Oh my baby!" over and over again, and , "No!"
A nurse came to shut our doors, but even through our shut doors and her shut doors, I heard this mother struggle and stagger and cry out.
It's not my story, and I never want or wanted this blog to be painful or hard to read. But it's echoing in my head still, so I thought I'd tell you that we live in this broken place where there is no hope outside of Jesus. God send angels and people to console that mother.
While Jen was upstairs, a little boy in the room across from us was called home. He's a little button, and doctors have been working on him intensely for hours and hours.
His mom experienced the anguish you can never imagine. She mourned her son's loss, calling out "Oh my baby!" over and over again, and , "No!"
A nurse came to shut our doors, but even through our shut doors and her shut doors, I heard this mother struggle and stagger and cry out.
It's not my story, and I never want or wanted this blog to be painful or hard to read. But it's echoing in my head still, so I thought I'd tell you that we live in this broken place where there is no hope outside of Jesus. God send angels and people to console that mother.
More Zoe Update
Dr. Musa just had a very good conversation with us about Zoe. She said there IS infection in Zoe's trachea that will be treated with antibiotics.
Dr. Musa said that they will move slower because removing her from the tube was tenuous before. That might be because of infection, or her breathing, or both.
We wanted to establish that Zoe didn't have feeding problems before, and pretty limited breathing issues. We keep hearing people saying that Zoe had those issues as persistent or pre-surgery.
Dr. Musa said that while Zoe ate before, she didn't eat enough, evidenced by her small size. Given her size and age, she would be classified as someone who isn't eating well.
It's a good point, but it means that ignorance is our fault. We should have known our physician was giving us bad advice and disobeyed it with the correct tactic - feeding her more calories and more food (directly the opposite of what our pediatrician had advised).
Dr. Musa's point - and I have deep respect for anyone speaking intelligently from their heart - is that a new baseline has been established. Zoe, with a functional heart, with an intubation tube, post-surgery. None of those things have happened before.
And the new baseline might not include bottle feeding. Or breathing without assistance like before. We'll have to find out.
Dr. Musa said that they will move slower because removing her from the tube was tenuous before. That might be because of infection, or her breathing, or both.
We wanted to establish that Zoe didn't have feeding problems before, and pretty limited breathing issues. We keep hearing people saying that Zoe had those issues as persistent or pre-surgery.
Dr. Musa said that while Zoe ate before, she didn't eat enough, evidenced by her small size. Given her size and age, she would be classified as someone who isn't eating well.
It's a good point, but it means that ignorance is our fault. We should have known our physician was giving us bad advice and disobeyed it with the correct tactic - feeding her more calories and more food (directly the opposite of what our pediatrician had advised).
Dr. Musa's point - and I have deep respect for anyone speaking intelligently from their heart - is that a new baseline has been established. Zoe, with a functional heart, with an intubation tube, post-surgery. None of those things have happened before.
And the new baseline might not include bottle feeding. Or breathing without assistance like before. We'll have to find out.
Low Cardiac Output Syndrome
We're listening in on rounds. Elliot said earlier this AM that "Slow and steady wins the race." Sounds like that's the new direction here.
Our guy Doug is giving his recommendations to the rounds before the two attendings - Dr. Musa, who was here yesterday and all weekend, and Dr. Gudousky, who is in today.
Doug says Zoe showed "Low Cardiac Output Syndrome" yesterday, and presented his plan, it sounds approved. No extubate today. Dropping the amount of vent usage so that Zoe has a bigger control over her own breathing, while still vent assisted.
Cultures show no infection.
They will start to reduce the sedative significantly, and address Zoe's pain concerns with doses of pain management.
I'm in on this strategy. I'd like to see Zoe a little more responsive and lucid and in control, with two good lungs, before extubation.
Updates coming soon....Doug and Dr. Musa will return to go over my notes.
Our guy Doug is giving his recommendations to the rounds before the two attendings - Dr. Musa, who was here yesterday and all weekend, and Dr. Gudousky, who is in today.
Doug says Zoe showed "Low Cardiac Output Syndrome" yesterday, and presented his plan, it sounds approved. No extubate today. Dropping the amount of vent usage so that Zoe has a bigger control over her own breathing, while still vent assisted.
Cultures show no infection.
They will start to reduce the sedative significantly, and address Zoe's pain concerns with doses of pain management.
I'm in on this strategy. I'd like to see Zoe a little more responsive and lucid and in control, with two good lungs, before extubation.
Updates coming soon....Doug and Dr. Musa will return to go over my notes.
49 States
Almost 15 percent of the Batblog's new visitors are from ...California. And no one from Vermont has visited the blog at all in the last month. But Hawaii, yep. what a ride. If anyone would like to try to make any sense of the blog's statistics, have at it.
What If You Were A Junior In High School
And your little sister was bouncing in and out of heart surgery and the ICU? Izzi's blog is pretty raw and honest. I love this post. C'mon Zoe. Let's go make a snow angel.
3 AM Suction
Nurse Kate and another helper suctioned out Zoe at 3 AM. And so I came after them and held her hand and talked to her a bit. Zoe's got the extra-strong KungFu grip.
I went and played her a little Robbie. Cuz it's me and Zoe dancing in the ICU and it's 3 am and we're still alive.
I went and played her a little Robbie. Cuz it's me and Zoe dancing in the ICU and it's 3 am and we're still alive.
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