Tales of TCH: The Beginning is the End is the Beginning

So we're finally home. Nyx is doing well. Her incisions don't seem to bother her much. Eventually I'll get around to posting some pics. The thoracotomy on her right side stretches from just below her armpit to the middle of her back. We've decided when people ask what the hell happened to our baby, we're going to go with the dingoes tried to steal her.

Nyx didn't come off of the ventilator until Sunday afternoon. Her catheter and arterial line followed later that night. She was able to eat a little too. On Monday mid-afternoon, they pulled her central line and moved us to cardiac step down. The privacy and rooming-in made things easier to handle.

We had a setback on Monday. Nyx lost weight for the whatever day in a row (it's all blurry) and refused to take anything from a bottle. Oddly enough, she only wanted my magic tatas. Apparently ICU and NICU babies rarely give up the bottle for the boob since the boob requires more work. The occupational therapist was really surprised and had little info to offer since she normally deals with babies refusing to go back to the boobies. Her suck was perfect. She just gagged constantly on the milk flow.

So we fought against the docs who wanted to put her on syringe feedings or an NG tube with fortified breastmilk. They agreed to give us another day before making any decisions. Sure enough, she munched like crazy on my boobies and gained weight. I'm not sure why the docs were so surprised. I mean, I know I've only been a mommy for, like, three weeks but, um, I know my kid. I wouldn't want to eat either after having tubes shoved down my throat and nose for days. I can only imagine how sore her throat was. Also being high as a kite for a week probably didn't help.

While we were struggling to avoid a feeding tube for the kiddo that Monday night, we also got a call about Bosley. He'd mounted a hunger strike at the pet resort. He hadn't had a drop of water since we'd left him on the prior Wednesday and only a few bites of food. Um, yeah, what the fuck? Why, exactly, did they wait so long to contact us? No idea but you can be damn sure we won't leave him there again. And, of course, they had no issue with charging us the full rate even though he didn't eat, drink or get his meds and slept on the concrete floor rather than bedding. Nice, huh?

So, faced with the reality that Bosley was probably going to croak, Dave had to leave TCH to mount a rescue of our snugglebumpkins. Yeah. I spent days alone at TCH with the kiddo. It was stressful and depressing but we got through it. She thrived. I dealt. Dave nursed Bosley back to health. We came home. The end.

But not really. We'll be back at TCH in six to nine months for Nyx's open heart surgery and full repair of her TOF defects. It's going to be a tricky surgery since Nyx's heart is way worse than we'd initially believed. Her pulmonary stenosis is very pronounced as are her right ventricle defects. She also has an additional vessel branching off her heart (uh, what?) and a coronary artery across and resting against her heart. So yeah. Tricksy.

Luckily our surgeon is the best surgeon at TCH and apparently one of the best in the world. Thank God for that. I don't want some flunky slicing and dicing on my kid, you know?

Speaking of flunkies, avoid, like the fucking plague, the emergency room at TCH. For a group of professionals supposedly versed in dealing with sick children, they were disappointing in their skills. They couldn't get IVs. No one washed their hands or wore gloves. The rooms were dirty. There were sick and coughing kids everywhere. They didn't follow the admission orders for Nyx and kept her in that plague infested hell hole of an ER for HOURS instead of sending us up despite our constant reminders. They showed no respect to a breastfeeding mom. They were rough in their handling of Nyx. They continued to attempt to run tests (EKGs and echos) even though Nyx was having multiple Tet spells and her oxygen saturation levels were dipping into the fifties. There were a few times I wondered if she was going to start breathing again.

Seriously, folks, our kiddo was BLUE before this cardiology resident who looked about twelve finally had the balls to put his foot down with the overbearing nurses and have her moved up to CVICU where she could be better managed. The second we hit the 18th floor, everything changed. The nurses and docs and techs washed or sanitized their hands every time they entered the room or touched a piece of equipment. They gave Nyx a mild sedative to calm her down and keep her oxygen saturation levels as stable as possible. They were gentle and calm with her. The doctors and surgeons and nurses explained every intervention or test they performed.

So yeah. From the first floor up, TCH is a great place. First floor? Ninth level of Hell.

Anywho. Off to eat. I'm starving.