Leah had the gastric emptying study on Thursday morning. She spewed almost immediately after they injected the milk into her tummy – but to be fair, she hadn’t had anything in her tummy in over a week and they put 30cc in all at once. That doesn’t even happen with her g-tube feeds. The gastric emptying study came out relatively normal – technically a very, very mild delay, but functionally normal. So no pyloromyotomy.
Surgery was Friday. Not a lot to say there – they did the Nissen and fixed the hiatal hernia repair, and also confirmed that a large segment of the omentum had forced its way into the chest cavity through a tiny hole. They were surprised at how much had managed to get through this tiny hole, but it did, and now it’s back where it belongs.
Friday and Saturday were largely days of rest and drugs. Yesterday Leah spent a little bit more time awake, and managed to get through the whole day without morphine – very exciting. Today was not such a fun day. At 4:30AM Leah woke up wailing and wound up vomiting. Vomiting?! It was wretched and horrible, too – like liquid morning breath. Gross. (I’ve come up with many adjectives today – abysmal, vile, foul, etc. Worse than a diaper.) Poor child – that can’t be very pleasant for her. That happened six more times today, including one episode that lasted a couple of minutes and included some scary little eye rolls and shaking. It appears that her secretions are pooling in the bottom of her esophagus since everything is still pretty swollen around the fundoplication. When it can’t pool anymore, it comes up!
The docs were also a little concerned that they seemed to be seeing milk in the g-tube when it was venting, so they did an x-ray. I swear, this kid is going to glow in the dark by the time she’s a teenager. The x-ray was fine, except that she is pretty backed up from several days of being given morphine and other meds and not really being fed. Her little bowels are just not really awake and moving. So we’re working on that.
Leah has also gotten in the habit of WAILING when something happens that displeases her – and I’m not sure whether it’s out of pain or annoyance, but either way, it’s heartbreaking. OT came in today to work with her a little bit and she was able to sit with some support from the Boppy, but when the OT went to lay her back down, it was like a siren going off – WAAAAAAAAAAAIL. So we let her stay in the Boppy after the OT left. About 15 minutes later, I noticed that she was starting to drift off – several times her eyes fluttered shut until she tipped forward or backward or just shook herself awake. “I’m not tired, I swzzzzzzzzzzzzzzzzzzzzz.” The minute she was lying down she was OUT COLD.
At present, Leah is basically glued to Mandy’s shoulder, and is wailing every time any attempt is made to put her down. She actually got her breathing treatment over Mandy’s shoulder.
We HOPE tomorrow is the day, but I’m just not going to say the H word right now.