tuesday 7/16/2013 part two "tet spell"

What a rotten, rotten day. After a good cry and some fall to your knees praying, I ran to the neighbors and asked the wife if she could watch my kids. I met Shaun at the hospital where they were putting Ava on an oscillator which delivers multiple breaths per minute. It seemed to do the trick and her oxygen percentages hung out around in the 80's.  (Mini-oxygen lesson here to help understand the rest: You want your oxygen generally between 92 and 99% in the NICU. In the 80's is tolerable for a time to figure out what to do to assist breathing. In the 70's you start gathering some help and working quite a bit faster. Below 60% means that organs are not perfusing..they aren't getting enough oxygen. The body preferentially gives oxygen to the brain first) So Ava was in respiratory failure today. When she was doing ok on the oscillator in the 80's, Shaun and I went to eat. When I came back Ava was working to breath over the oscillator and her oxygen was decreasing into the 70's. The team was assembled. She was given more morphine to depress her own breathing so the machine could do it for her, the morphine wasn't cutting it so they paralyzed her completedly. From one o'clock until three o'clock we watched her plummet. Her oxygen was in the 20's at one point but would hardly go over 60% despite everything being done.The oscilator was adjusted and nitrous oxide was added to the breathing. They tried just bagging her mannually wit 100% oxygen (room air is 21%). The intubatiion tube was moved around (I think she's had about 5 or 6 x-rays today). Finally after the echocardiogram, the cardiology doctor came to see her. He asked a bunch of questions and suggested a few vasopressor drugs to help shunt blood back to the heart and then he squeezed her belly really hard to put lots of pressure in her chest cavity to shunt blood to the heart-that immediately brought her oxygen right up to the high 80's. So then one person had to keep her knees to her chest-hard enough to keep her feet purple to get the oxygen up. Then the vasopressor drugs seemed to kick in. So now, at 6pm, her knees are still to her chest-though not as hard and her oxygen is back in the high 90's. She is still paralyzed and will remain so until she is more stable. She will have her own nurse, possibly 2 tonight. So, this was a "tet" spell, likely precipitated by a terrible lung infection (pneumonia) which is probably due to her spitting up after feeds. Her g-tube surgery is cancelled, and that won't even be a topic for discussion for months. She is going to be transferred to the cardiac unit who is better capable of dealing with these tet spells. (A tet spell refers to the oxygen drop that is due to the condition she has called Tetrology of Fallot.) The heart doctor says that they will avoid the complete open heart surgery if at all possible until 4-6 weeks after the lung infection has healed and she is back on room air. If her heart continues to have problems then cardiology may consider a BT shunt which is just a temporary fix until her lungs are healthy enough for open heart bypass surgery. We do NOT want another spell like today. It was life threatening, and the cardiologist made sure I knew that.