Eli and Noah Update

This last 48 hours has probably been the biggest roller coaster of our lives. We went to sleep Friday night thinking that Eli had done excellent through his five hour surgery to correct his congenital defects in his esophagus and trachea. We awoke Saturday to find that Eli was not doing well. In fact by mid-day the pediatric surgeon set us down and let us know that things were "really, really bad." Eli's blood pressure had plummeted to a mean of 18 earlier and they had been able to raise it by means of Dopamine, Dobutamine, Epinephrine and Nitric Oxide (pushed into his lungs with ventilator), but his blood pressure was still too low. His CO2 levels were too high even with the highest ventilator settings (60bpm) and so they put him on a special high frequency ventilator that shoots air into his lungs rapidly. They were, and are still afraid that the shaking caused by the high frequency ventilator might affect his esophageal area (that just underwent surgery), but it is necessary to keep his stats level. The biggest problem though was the PH level of his blood. It is supposed to be at 7.4 - Eli's was as low as 6.9. The acidity of his blood was making it hard for both his lungs and heart to function. They were basing him with several different medications, but his PH level wasn't really responding. Anyways, I could go on about the interventions they had tried, but it would take too long. There were several neonatologists and two surgeons along with several nurses huddled around him. They had "thrown the whole tool box of interventions at him." The surgeon said most likely they would have to put him on an ECMO machine (Extra circular membrane oxygenation) that would take over the work of his lungs and heart for him. They only consider using an ECMO when there is less then a 20 percent chance that the baby will survive on his own, and Eli was already in this criteria. This was an all-time emotional low for us. The surgeon (who by the way was making every possible effort to make the right decision - he literally consulted with hand fulls of other doctors) told us that they would wait for Eli's next lab results and if they were not better they would hook him up to the ECMO. The problem with the ECMO is that it only has about a 75% survival rate. To use such a machine requires blood thinner. If Eli was on the ECMO and started to bleed at his surgical site there would be absolutely no way for the surgeon to stop the bleeding and Eli wouldn't make it. The labs came back 45 minutes later and they were barely better. The doctors went back and forth for half an hour and finally decided to wait for another half hour and see the next lab results. The doctor said that Eli had bought himself another hour. The next hour came and he bought himself one more and then one more and so forth. The surgeon had the OR open and prepped for the entire afternoon, evening, and into the night as Eli bought himself hour after hour with incredibly slow progress. When we asked the surgeon how long he was going to stay he said, "until your baby gets better - all night if I have to." When the nurse who had spent the entire day working with Eli went home she made sure to let us know that she would pray for Eli. We found out today that she had kept waking up worrying about Eli. Noah had been transfered to the UK NICU from St. Josephs and was in a different room. About 7 or 8 PM they went through the special effort to put Noah in the same room with Eli. Coincidentally or not, shortly after Noah was put in the same room with Eli, Eli's numbers jumped. His blood PH jumped to 7.25 and then 7.3 and then 7.36. The doctor let us know about 10pm that Eli no longer met ECMO criteria. Our relief was palpable. Eli maintained his numbers through the night with some small improvements. They lowered his Dopamine from 20 to 15 to 10 and then to 5. They also lowered his Epinephrine from .3 to .2 and then today to .1. So as I write this, Sunday night, Eli has stayed stable throughout the day with just a few problems. His left lung was partially collapsed due to the ventilator and they were able to fix it by changing his position. They've continued to base his blood and give him blood pressure medicine. They've given him several blood transfusions both yesterday and then again today. He has a pic line that goes to his heart and main arterial connection from which to draw blood and measure his blood pressure. His kidneys were not working properly this morning, but with some additional medication his urine output has slowly went up and is now normal. Right now they are making slight adjustments and waiting to see how he handles them. His blood oxygen is not great, but they're hoping it will rise. It's difficult to see your son with so many lines and wires attached too him, with a breathing machine in and all puffed up because he is retaining fluids. I tried to count how many drips and medicines they have constantly going into him and I think it's at least 9 different ones. He has gotten several doses of viagra (a muscle relaxant - not its most advertised effect) and just a whole ton of interventions. We are still praying that he will continue to get better, but today has been so much better than yesterday that I can't put it into words. The people at UK Children's hospital have been so great and caring and we especially want to thank everyone who has been praying for Eli to make it through his difficulties. We sincerely believe it is due to those prayers that Eli has made it this far. We will try to keep you updated as things progress. Please continue to keep Eli in your prayers. Also, so you know, Noah is doing great - he just needs to learn how to eat is all - until then he will continue to eat through a tube that goes down his nose into his stomach.