Thursday evening

Well, today was a big day. This morning the decision was made to stop Emma Kate's paralytic drug and let her start initiating some breaths for her afternoon scoping. Her numbers are looking awesome- we've seen peak pressures in the teens and low 20s today, and I swear I even saw a 9 a few times. Everyone is really pleased with her numbers on the ventilator. The scoping went well- she tolerated it with sedation, and her airway is open but smooshed a little bit. They say it is significantly better than it was 2 weeks ago when it was just collapsing flat and closing off altogether. It's not as wide open in the repair area as it is in the normal part of her trachea, but it's not moving much if at all, and she even tolerated having the larger scope passed in there and was taking breaths in and out around it with no trouble and no additional flattening or collapse. So, the results are not as black and white as wether or not this fix is going to last or if we need to reoperate- it's more of a gray zone of her airway being open and improved, but is it *enough* and will it hold up to more breathing, and what will happen when she coughs or breaths hard. While she was still sedated for the scoping, the nurses gave her a bath and washed her curls, and I gave her a good rub-down with lotion afterwards. She also got her abdominal drain removed.

Right now we're playing a game of how much sedation does this little girl need- her doses of sedatives and pain killers have been so astronomical, no one has any idea of how she's going to come out of this over the next few days. We're transitioning her to methodone and adavan to help prevent withdrawal issues from the narcotics but we have to adjust doses regularly to establish what seems to be enough but not too much or too little to keep her in a good place. This afternoon was really hard to watch because she was so incredibly awake. She actually opened her eyes a few times. Most of the time she was just wiggling around a little bit, which is good, but occasionally she'd really fuss over the tube, and her facial expressions were just gut wrenching- it so looked like she was screaming crying but no noise was coming out. It was excruciating waiting for the sedatives to kick in after they had been given. I know she's probably still pretty out of it and I know she won't remember any of this, but it's just traumatic to see things like that. Luckily the sedatives took effect and she's quiet now.

The plan for now is to let her rest through the evening and overnight, more sedated than awake, and to let the ventilator continue to work her breathing for the most part. Starting tomorrow they're going to let her be a little bit awake more often and also start reducing her narcotics as her new drugs start taking better effect. She'll start being weaned off the ventilator support as well. We'll see over the next few days wether or not the patch is going to stand up for her or if it will start collapsing under regular use.

We've noticed a few times that her stomach suction tube seems to be pulling feeds out (her feeding tube is actually past her pylorus and in her small intestine), and we expressed our concerns today- the xray still shows that the TP (transpyloric) tube is properly placed, but we wonder if it is just stenting the pylorus open and allowing feeds to slip back into the stomach. We were just worried that it was causing her to not get the nutrition and fluids she needs because they're all getting sucked out. We went ahead and shut off the suction but left the stomach tube in place and will watch for her belly size to indicate whether or not there is anything building up. I have a feeling it will be fine, especially since her intestinal motility is improving and now she'll be off the paralytic. We'll keep an eye on it.

Emma Kate is looking great overall- a little more like herself. The swelling is nearly completely gone and her color looks good. We're getting lots of positive comments from a lot of the staff here, and they're especially thrilled with her numbers on the ventilator.

Gretta is doing well and growing like a weed- I jokingly call her my fat baby- her cheeks and neck are so rolly-polly! She's going through a little phase of fussiness and gassiness, but is still doing great at night (knock on wood!).