Emma did very well the first night. They did have a lot of problems getting all the special iv lines in. In the morning they told us Emma was a little star and was doing so well. Then the day went downhill. Emma finally couldn't tolerate any more poking and prodding. When they were doing an ultrasound of her heart she took a turn for the worse. They said it tipped her over the edge. Her blood pressure dropped dangerously low and she started requiring all the oxygen they could give her. A doctor (the resident) came running out to the waiting area to tell us they would have to put Emma on a heart lung bypass machine called ECMO. They had told us when they came to pick her up that this was the worse resort. But, Emma rallied before the ECMO team could be brought in. She was able to bring her blood pressure up with more medication help. The attending doctor (one in charge) has since told us Emma made him eat his words and he never imagined that she wouldn't go on ECMO. They also added a special gas to Emma's ventilator to help her get oxygen around better. Emma also needed to not be stimulated so we
couldn't touch her. That was very hard but we knew it was best. Emma's heart rate was also at 200 beats a minute. Emma rallied once more during the night when they finally found how much medicine to give Emma to keep her sedated but still be able to keep her blood pressure up. They were able to start Emma on special iv nutrition called TPN (vitamins etc) and lipids
(fats). We got to see her x-ray today during the doctors rounds. They showed us the first one and the one from this morning. Her heart has shifted over a great deal to where it belongs. They were able to see that she has what they think is a really good amount of lung tissue on the right and the bowel in her left side of her chest is being kept emptied of air that they could see some lung tissue at the top of the left side. They won't be able to be sure of how much lung tissue she has until her surgery. At this time Emma is almost all the way off the special gas. She is on Fentynl (a form of morphine) and Versed (what people get to put them out for a colonoscopy) to keep her sedated. She is on Dopamine to keep her blood pressure up. She also is on antibiotics as a precaution. She has a special tube in her mouth to her stomach to keep the air out of her bowel so it doesn't press on what lung she does have and doesn't make her heart move over to the right side again. She is on a special ventilator called an oscillator that moves very fast and gentle. She has ear muffs on to reduce the noise and they keep a blanket over her eyes so the light doesn't bother her. She has a PICC line (special long term iv) in her left leg. She has an arterial line in her right leg so they don't have to poke her for lab work. This line also has a special blood pressure monitor in it. She has an iv in each hand also. So hard to see all this hooked up to her but we know it is best. She is trying out a new mattress they just got in that should be gentle on her skin since she has to stay in the same position all the time. We are waiting for them to do an ultrasound on her kidneys. No suspected problems but they want to be sure before surgery.
Will post pictures tomorrow morning. Jason and I are staying at the Ronald McDonald House to be close to her. So for tonight we are off to tell our precious girl goodnight, give her kisses, and let her get some rest. Daddy and I will be back early in the morning. Continue your prayers for her and also say a special prayer for her special big sister Cloey. She is having a hard time with all of this but she has a great support team in trying to help her get through it with her Mom, step-dad Jeff, and Lili in North Carolina. We are thankful to everyone for their love, support, and prayers during this time of need. It means so much to Jason and I.
