Saturday, March 27, 2010


Well. Sort of. Nyx had her post-op studies done. We had two opinions on them, those of her cardiologist and one of his colleagues. Her heart looks good. The fluid pocket has disappeared. She has no rhythm problems and the right ventricle seems to have relaxed some.

Unfortunately there is nothing left of her pulmonary valve. This isn't all that surprising. Her valve was in such bad shape there wasn't much that could be done to save it. For now the lack of a valve isn't too concerning. She'll be okay for, oh, another ten years at least. After that she'll need another open heart procedure to replace the valve.

In the short-term, we're more worried about the arteries feeding her lungs. They are just so small. If they don't grow within the next twelve months, we'll be back at TCH for a cath procedure. Fingers crossed those little buggers grow!

Sunday, March 14, 2010

It's Been Emotional

Big Chris said it best. It's been emotional.

We've been home for a few days now. Nyx was discharged on Wednesday afternoon. By that point I was ready to sign her out AMA. We had the best experience at that hospital back in September but this time around? Fuck those shitty nurses. Seriously.

Look, I know hospitals are busy places and nurses are overworked but for the love of God! Babies should not miss their pain medications because some nurse can't be bothered to watch the time. I had to pull a Shirley MacClaine ala Terms of Endearment to get my baby her pain medication. (GIVE MY DAUGHTER THE SHOT!) Pumpkin went 9 hours without meds because the orders weren't written properly. I asked the nurse not once, not twice but THREE times if there was something Pumpkin could have instead of the narcotic written for her. No answer, no reply.

I'm not stupid. I know all she had to do was wake the attending. They did it the last time we were on that floor and Nyx had some pain management issues. He was only too happy to come down, check her out and write a new order.

When the docs came through to do rounds, Nyx was clearly in pain so the cardiologist and nurse practitioner wrote new orders for alternating doses of Motrin and Tylenol with Codeine. Great, right? Not so much. The nurse leaves to get the medicine, I assume. Doesn't come back for ten minutes. I buzz for the nurse and am told by the secretary person the nurse will be there soon. Ten more minutes go by. Nyx is screaming and rigid with pain. I'm fed the eff up. I leave her with Dave and head out to find the nurse. She walks by just as I open the door. I lose my shit--as calmly as possible, of course.

Pumpkin got her pain meds.

I figured that would be our one hiccup during the stay. Again, um, not so much. That night they started giving Pumpkin something to make her poop. Guess what? She had a massive adverse reaction. Lots of puking and dry heaving. You can imagine how much fun that was for her with a huge chest incision and a sternum held together with wire. And, of course, she puked up all her pain meds so she had nothing to help with the pain--AGAIN.

Early in the morning, right around shift change, Nyx puked all over herself for the millionth time. I managed to keep the puke from hitting her incision and chest tube sites but it splashed all down her legs and into that crappy little plastic house thing covering the IV on her foot. It soaked the white foam/cloth brace too. I couldn't clean it because the IV was already rather iffy. The catheter wasn't even fully inserted because of a valve. I didn't want to mess with it too much so I buzz the nurse. She tells me it will have to wait until after shift change. Um, okay. What about her pain meds? Those will have to wait too.

I clean up the kiddo (no easy feat since she's tethered to a pulse ox cord and still had a chest tube hanging out of her right side, just under her arm) and change the bedding. Lord knows you can't get a CNA or someone from housekeeping to help with linens at that time of the morning. I get Pumpkin calmed down and we pass out together because neither of us has slept in days--her because of the pain and me because, well, my baby was in pain. Who the hell can sleep through that?

So I wake up a little before eight and still no nurse to clean her foot or to bring pain meds. I talk to the attending during his early morning rounds. He tells me he'll find her and send in her in but she never comes. I buzz and buzz and buzz and she finally--after nearly forty-five minutes later--finds her way to the room. No pain meds in hand because she says the order is PRN. Um, no, it's not. It's every three hours. And she still didn't clean the baby's foot. She disappears.

By this point I am effing livid. The rest of the surgeons and docs and students come through to do their rounds and I tell them exactly what I think about how they and the charge nurse run that floor. My pumpkin is six months old. She has no real concept of pain or how to cope for hours on end with it. To have her suffer because of incompetence was absolutely unacceptable to me. My baby puked all night, sometimes gagging, and there was no suction hooked up in that room. Considering those nurses took half an hour to answer a buzz, my baby would have aspirated and died before any of them finally made it to her room. And that filthy puke foot? How fucking ridiculous is that?

And don't even get me started on the nurse who ordered six (6!) feedings worth of breastmilk from the Milk Bank knowing Nyx wouldn't take a bottle (we told her REPEATEDLY) and then looked surprised the next day when they had to pour all those bottles of milk down the drain. Gee, really? Man, I worked so hard for every single ounce of that milk. To have it go to waste hurt. I'd been pumping that milk to bring home for the sippy cup and to make homemade baby food. I came home with 17 bottles of milk so not too bad a haul but still. I could have had 23!

The poop hit the fan. They sent in a patient advocate, the charge nurse and the floor manager. Nyx finally got her foot cleaned and we had her pain meds on time. It still took an average of fifteen minutes for a nurse to answer a buzz but whatever. We got through those last few days alive.

Our discharge wasn't very smooth either. They came through that morning to do her last two chest x-rays and heel sticks. It took them four sticks to get enough blood. During our four and half days on that floor, the lab techs stuck Pumpkin's heels a total of 19 times!

So anywho. Lab techs take forever to squeeze out those little drops of blood. The nurse that day (a damn fine nurse) came in and told them (in the nicest terms) to fuck off down the hallway. Whatever blood they had was all they were getting. She gave Pumpkin her pain meds and then had someone from x-ray come up to take us down in a wheelchair for her x-rays. Since the kiddo didn't have that tube anymore they wouldn't do portables. Whatever, right?

X-rays and labs done, we waited for the docs to do their rounds and give us instructions. Pumpkin had a little bit of fluid around her heart but it wasn't enough for concern. We'll have it checked out tomorrow at her cardiologist visit in Austin (the first of two this week.) We were given a refresher on cleaning the incision site and giving Pumpkin baths. We went through the list of what to watch for and who to call. Finally, we thought, we're getting the hell out of here.

Except someone misplaced our discharge paperwork. That was ten in the morning. Our nurse finally tracked it down a little after one in the afternoon. Oi! So we sign and sign and make a run for it. I felt like William Wallace ala Braveheart when we finally pulled out of that parking garage and onto Fannin for the last time. FREEDOM!

I will say I don't think our experience with nurses on that floor is indicative of the level of care that hospital offers. I think we just had a batch of lousy nurses. It happens. I'm not about to paint the whole profession with a broad brush. I still think the bulk of nurses are compassionate, caring and skilled people.

If anything, I've learned you have to advocate for your kiddos. I'm sure those nurses thought I was on hellacious bitch but I could care less. I'm a mommy now. Making people cry--that's just part of the job.

Thursday, March 04, 2010

NICU Nyx & The Tale of the Great Ticker Fix

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.