Dear Jadon is having a really tough go. We were excited on Friday when they told us they were planning to extubate him (take him off the ventilator) on Saturday. On Saturday he was extubated but he did not tolerate it well and ended up on cpap (oxygen via mask) fairly quickly.
Over the last few days we have learned there has been a challenge on that front. During the heart surgery the nerve controlling Jadon's left diaphragm was damaged. Apparently this occurs on occasion and often (not always) will correct itself over a couple of months. During this time however the left diaphragm is paralyzed and so the left lung does not inflate properly. This is of particular concern for Jadon because he has a hypoplastic (undersized and underdeveloped) right lung. So... with this he has a damaged right lung and a damaged left diaphragm. .. poor guy can't catch a break!
The plan over the next few days is to go in for another operation; this one a diaphragm plication in which they pull down the left diaphragm and tie it down to leave more room fur the left lung to inflate. Apparently this is not a big operation and not too invasive. The problem right now holding things back is that Jadon still has a fever and they are trying to get that under control first.
Today was an up and down day. Jadon was really struggling and not doing well this morning. He was on cpap (where he does all the breathing with a slight continuous air flow into his lungs). He did not look comfortable, he was working hard to breathe and his color looked bad. Around 3 they changed him back to bipap (where extra air is blown in to his lungs when he inhales so he gets help). He has done much better since and his color and comfort level have both improved. They also removed his pacemaker wires and his arterial blood line so he has less and less connections and tubes into him.
Here is hoping the fever gets under control and they can get the plication done tomorrow so he can continue working his way out of the critical care unit.