Catch Up

So we can remember later, I'm going to just note the main things that have happened in the last couple of days.

11/18 moved down from 8 to 7L on the oxygen, high flow

11/19 moved down from 7 to 5 and then 4L. She was doing ok, but they wanted her o2 stats in the 90's and she was hanging around 88.
  Inserted a NG tube to help with the extra air in her tummy coming from the nasal cannula. This tube goes down her nose and stays in the tummy and suctions the air out. Not thrilled with this, but she does get really upset when she has gas and/or needs to poop. (Blue tube in picture below)

     

  Dr. Choi, one of the cardiologists stopped in and we talked about possible scenarios for Lyla's surgery. Basically the cardiologists, Dr.'s and surgeon will have to reassess where her heart condition stands once this virus passes to decide which direction to go. Ideally the surgeon would like her to be closer to 6 months, but Dr. Choi and Dr. VanGundy feel strongly that Lyla won't make it to 6 months before needing surgery. Before this hospitalization she was headed to be admitted for a pulmonary band surgery within the next week (last week). And now with her history of not gaining weight and
her struggles this time around in the hospital, they feel surgery will need to be before 6 months.
Ideally she should wait 6 weeks post virus, which would at least get her past 3 months. But if she doesn't do well in those 6 weeks, surgery will happen. ( which surgery; total repair or pulmonary band, TBD)
   From what I remember and understood from our conversation, is basically since Lyla's heart is not complete, like a hole in the middle, the blood doesn't flow as it should in one nice circulatory motion. It follows the path of least resistance. This is probably the pulmonary way since she has extra fluid in her lungs, too much going in and not enough pumping out. Her heart works so hard and she basically uses all her calories/energy just to breath.

11/20 moved down from 5 to 4L on the oxygen.
  Removed NG tube
  Talk about removing central line IV, but need to insert an IV for emergency
  Turned off Milranone, and started Caprical(sp?)

11/21 now on 3L
  Removed ND tube ( the one going down to her intestine) she was pretty PO'd about this and they had a hard time calming her. Gave her some adavan.
  Started feeds through Gtube continuously, vented.
  Were unsuccessful finding a vein for the IV.

11/22 started her on home regimen feeds. Continuous through the night and 4 bolus feeds during the day.