Day 38

Today was a bad day for Levi. No matter how high we had the settings on the pump, he just couldn't seem to stay where he needed to. He was doing a little better before we left. Things are pretty much the same as they were yesterday. No breath sounds, no air on x-ray. Settings are high on the pump. They were sucking out blood again today, but not as much.

We talked to the surgeon today regarding how we felt about where we are. We understand that we really only have maybe another week to let him get better because that is the most the circuit will allow before it just gets too clotted to work. So, this morning we had gained 325 grams. That is a good bit. Levi is super swollen and weighs the most he has weighed which is not good. He can't open his lungs with all of that fluid. We told the doctor that we want to get the steroids out of his system as quickly as possible because he seems to be getting all of the side effects and none of the benefits from them. We also want to get him dry again to give him a better chance. So we changed the plan a little in order to wean from the steroids faster and we talked about increasing his diuretics to help him get the fluid off. Dr. A. does not think that Levi will get better once he is dry due to the fact that he has been dry before and didn't make a lot of progress but he is willing to do this because it is what we want. We do not care if that is how he feels, we have to try. We talked about starting dialysis to help him get the fluid off more quickly and give him the most time dry we can to try and open his lungs. We will make the final decision on that tomorrow and see how it goes.

We do want everyone to remember that we went into this knowing that the doctors have given Levi less than a 50% chance to make it and he has a VERY severe hernia. His lungs are really immature and they are trying to get better but he just hasn't been able to get them working. We also want to have everyone's support as the days go on. Please do not send us negative messages, we have enough going on. We are praying with each decision we make and we are trying to give Levi his best possible chance to pull through. At the same time, I refuse to push him to the point that he is in so much pain and is miserable. I can't watch him fight for his life in pain. He is confortable right now, but we could get to the point where pain meds are not enough; we just don't know. We do not know what is going to happen this week and obviously we just want our Levi to recover miraculously overnight. We are making these decisions now knowing that we are doing every last thing we can to try and help him pull through. We have not given up hope. We still believe that God is faithful and His will is good. It doesn't look good right now but we know that it can turn around in an instant if that is God's will. I think at this point we are really at peace because as hard as all of this is, we know that everything will work out just as it is supposed to. There is no question about that. Will everything work out exactly as we want? Who knows. But we would like everyone to know that we are not giving up and we hope you won't either. We hope you will continue to pray with us for Levi and we hope that you will all continue to support us in this journey. I am still fasting (which is super hard!!!) and we are not giving up. If Levi is supposed to have a short life on this earth, then that is what will happen and either way, it is up to God.

"For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts higher than your thoughts."
Isaiah 55:8-9