Clinic Report

Let me start this with saying that John looks awesome, he weighs 39 pounds 10 ounces, the biggest ever. He is learning his school stuff faster than ever. Is more independent, ornery and happy than ever in his life. To look at the outside you would never know what the clinic report had to say. As a matter of fact we were shocked that the report was so bad and the clinic people were shocked that he looks so awesome.

Monday, John was sedated and had a scope done to look at his throat, stomach and intestines and to get both aspirate and biopsies to see how he was doing. They found an esophageal varice. It is a bulging vein in his esophagus caused by escalating liver damage and has the potential to rupture and bleed. This is rather scary for 2 reasons, 1 we live 45minutes to an hour from a hospital that could actually do something to help him, and 2 it means that his liver damage is getting worse and things cannot continue as they are and him live.

The aspirate - a bit of intestinal goo - showed that the bacteria growing in John's gut is tons and loads but can be kept at bay with 2 antibiotics that actually work well with his system and one new probiotic that is of course expensive and not covered by Medicaid. (Don't take me wrong, we are ever so thankful and grateful for all the things that Medicaid can and does cover, but people who think it's perfect and we should all be on gov't health care have been deceived.) The biopsies showed ulcers and extreme inflammation in the part of his intestines where the small and large bowel connect. In normal systems there is a valve there that keeps things all going one direction, John doesn't have that valve and this is a real area of problem for him. In the medical team meeting in Omaha on Monday they will address this inflammation and give us the plan for that then.

For now this is what we know, even with all this inflammation and ulcers John is dealing with food better than he has ever done, eating more than he has eaten in a very long time and not throwing up or being sick from it. That gives us hope that plan A has a chance to work:

Plan A - get John off tpn/lipids as soon as possible and then hope and pray that his liver damage is limited to an amount that he will be able to live a whole life or at least several more years without the need of transplant.

Plan B - if plan A fails, evaluate whether John is a good candidate for transplant or not, if he is list him and hope that he is able to be a transplant success story (there actually are some for liver/small bowel) and if not, well I can't even bring myself to type that part out.

We are hopeful for plan A, we are scared of plan B, we are hopeful that plan B will work, we are hopeful, we are scared, we are thankful that no matter what happens to John or to us that he is in Christ's hands and his life is eternal no matter how long his life on this earth may be. Lord have mercy, Christ have mercy, Lord have mercy.