Jeez. Has it been one hellaciously long week! I have a few minutes so I thought I'd update the blog.
Pumpkin went into surgery early Tuesday morning. Around 6:00 we carried her back to the holding area outside the surgical suites. She had had an IV running for three hours or so and wasn't impressed. She was also rather fussy because we'd had to cut off all breastmilk at 3 a.m. She was starving and reaching for me--well, my boobies actually. Dave managed to keep her calmish until the anesthesiologist came out to get her.
It was hard to watch her go back to surgery but not as bad as the first time. She wasn't as tiny and vulnerable. I only teared up a little and managed to choke it down as we rode the elevator back to the 15th floor to get our things.
My parents and Dave's Uncle Jimbo and Aunt Cecilia were here to support us through the surgery. Nyx went in a little before 7 a.m. and came out of the OR just before 3 p.m. The procedure went very well. She was on the bypass machine a little longer than anticipated and was in complete circulatory arrest for quite a while. We'd been told her heart would be completely stopped for ten minutes at the most. In the end, it was more like forty. The repair in that area was just so delicate and difficult.
It's not a nice experience to have a nurse come out and tell you your baby's heart still isn't beating. The entire time she was in cardiac arrest I was close to puking. It's just horrendous to think about the what-ifs. Her hear restarted without any problem and she came off the bypass machine beautifully (as her surgeon put it) at the end of her surgery.
Nyx's first night in the CVICU went very well. She was weaned off the ventilator and various cardiac support drugs during the night. Her pee went from that shocking orange (because of the hemolysis) to clear. By Wednesday afternoon, she was off the vent and doing well.
And then things changed. She stopped all urine output Wednesday evening so the Foley cath had to be reinserted. She still didn't make any pee so they started her back on Lasix. It pulled a little fluid but not much from her body. She also still hadn't woken up fully. She tried to cough and choked so a nurse suctioned some gross ickiness from the back of her throat.
The nurse and I sat her up. Nyx choked and coughed again. Blood gushed down her chest tubes. Like a lot of it. Every time she would move more blood would run down the tubes. It was gross but a good thing. Better out than in, you know?
They gave her a breathing treatment to try to pull up all that grossness and even did a little chest thumping to get gunk moving. It seemed to help some but it wasn't nearly as effective as we'd all hoped.
On Thursday, Nyx started to trend downward. Her urine output was still nearly zero. She was so puffy and swollen I barely recognized her. I'm not kidding. She looked like a marshmallow. They gave her more Lasix and added a second diuretic, Duiril. It took a little more fluid off her body but not much.
Because there was some concern about her heart function, they placed her on Milrinone, a medication to treat acute heart failure. Yeah, um, it's not fun to see that medication stuck into a pump for your kiddo.
Pumpkin's right ventricle is just so incredibly muscular from having to push so hard to shove blood through her pulmonary artery and past that crappy valve. Now that they're repaired that massive hole between her ventricles and opened up that artery, her right ventricle is struggling. It doesn't relax at all in between pumps. And that's a problem. Hopefully it will "learn" to work better over the coming months. If not...well...we'll cross that bridge when we get there.
Thursday afternoon, Pumpkin started to struggle with her breathing. It was more labored and sounded fairly wet. Her oxygen saturation levels fell to the low eighties. They did a chest x-ray and discovered a massive pocket of fluid in her chest. Her lobes of her lungs had collapsed.
Um, yeah. Not good. Like ohmigod my baby is going to stop breathing and die not good.
They put in a third chest tube. It immediately drained nearly 100 cc's (almost four ounces) of fluid. Her right lung reinflated and her O2 sats went right up again. Over night that tube drained an additional 100 cc's of blood and fluid. That's almost eight ounces of fluid from her tiny little chest cavity. No wonder her lungs collapsed!
She stabilized and improved over night. She put out a lot of pee, so much she's no longer puffy and is actually negative in fluid levels for the first time since Tuesday. Her breathing is great although her left lung still has a little fluid in it. That's nothing a little coughing and a breathing treatment or two won't fix.
She was taken off the Milrinone this morning. An echo showed her heart function is normal-ish so she doesn't need any cardiac support drugs. They're giving her a unit of blood right now because her hemoglobin and platelet levels are a little low. She'll get one additional unit of Lasix after the blood just to make sure she doesn't hold onto any excess fluid. Sometime today she'll probably get to try a bottle of breastmilk, not much but an ounce or so.
We're hopeful she'll continue to improve over the next day and get out of the CVICU by the end of the weekend. Not that it's any consolation but Nyx is actually the most stable CVICU patient at the moment. That tells you about the kind of patients treated here. Seems to be the worst of the worst sadly.
But the staff is amazing. I feel completely comfortable leaving Pumpkin in their care. As paranoid as I am about that kid's safety that says a lot.
Nyx's first night in the CVICU went very well. She was weaned off the ventilator and various cardiac support drugs during the night. Her pee went from that shocking orange (because of the hemolysis) to clear. By Wednesday afternoon, she was off the vent and doing well.
And then things changed. She stopped all urine output Wednesday evening so the Foley cath had to be reinserted. She still didn't make any pee so they started her back on Lasix. It pulled a little fluid but not much from her body. She also still hadn't woken up fully. She tried to cough and choked so a nurse suctioned some gross ickiness from the back of her throat.
The nurse and I sat her up. Nyx choked and coughed again. Blood gushed down her chest tubes. Like a lot of it. Every time she would move more blood would run down the tubes. It was gross but a good thing. Better out than in, you know?
They gave her a breathing treatment to try to pull up all that grossness and even did a little chest thumping to get gunk moving. It seemed to help some but it wasn't nearly as effective as we'd all hoped.
On Thursday, Nyx started to trend downward. Her urine output was still nearly zero. She was so puffy and swollen I barely recognized her. I'm not kidding. She looked like a marshmallow. They gave her more Lasix and added a second diuretic, Duiril. It took a little more fluid off her body but not much.
Because there was some concern about her heart function, they placed her on Milrinone, a medication to treat acute heart failure. Yeah, um, it's not fun to see that medication stuck into a pump for your kiddo.
Pumpkin's right ventricle is just so incredibly muscular from having to push so hard to shove blood through her pulmonary artery and past that crappy valve. Now that they're repaired that massive hole between her ventricles and opened up that artery, her right ventricle is struggling. It doesn't relax at all in between pumps. And that's a problem. Hopefully it will "learn" to work better over the coming months. If not...well...we'll cross that bridge when we get there.
Thursday afternoon, Pumpkin started to struggle with her breathing. It was more labored and sounded fairly wet. Her oxygen saturation levels fell to the low eighties. They did a chest x-ray and discovered a massive pocket of fluid in her chest. Her lobes of her lungs had collapsed.
Um, yeah. Not good. Like ohmigod my baby is going to stop breathing and die not good.
They put in a third chest tube. It immediately drained nearly 100 cc's (almost four ounces) of fluid. Her right lung reinflated and her O2 sats went right up again. Over night that tube drained an additional 100 cc's of blood and fluid. That's almost eight ounces of fluid from her tiny little chest cavity. No wonder her lungs collapsed!
She stabilized and improved over night. She put out a lot of pee, so much she's no longer puffy and is actually negative in fluid levels for the first time since Tuesday. Her breathing is great although her left lung still has a little fluid in it. That's nothing a little coughing and a breathing treatment or two won't fix.
She was taken off the Milrinone this morning. An echo showed her heart function is normal-ish so she doesn't need any cardiac support drugs. They're giving her a unit of blood right now because her hemoglobin and platelet levels are a little low. She'll get one additional unit of Lasix after the blood just to make sure she doesn't hold onto any excess fluid. Sometime today she'll probably get to try a bottle of breastmilk, not much but an ounce or so.
We're hopeful she'll continue to improve over the next day and get out of the CVICU by the end of the weekend. Not that it's any consolation but Nyx is actually the most stable CVICU patient at the moment. That tells you about the kind of patients treated here. Seems to be the worst of the worst sadly.
But the staff is amazing. I feel completely comfortable leaving Pumpkin in their care. As paranoid as I am about that kid's safety that says a lot.
5 comments:
Wow. What a week. I'm glad to hear that Nyx is improving. Jesse and I will be sure to keep her (and you guys of course!) in our prayers!
Maria & Dave,
What a rough surgery week for you! I'm so glad to hear that they were able to resolve the fluid/lungs problem for Nyx!
Hang in there. You are handling this so well. It's great that you can be so strong for her and give her what she needs.
Sending warm thoughts your way,
Lori
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