We are lining up all of our forces to convince Medicaid to allow Landon to go to Boston and be treated in the Center for Advanced Intestinal Rehabilitation at Children's Hospital Boston. There is a good possibility that they can save Landon's liver and delay, for a long time, if not prevent the need for a transplant, in Boston. Instead, Medicaid has offered to send Landon to Cincinnati for an evaluation for a transplant. Apparently Medicaid is willing to pay hundreds of thousands of dollars for a transplant now instead of a few thousand for treatments that could delay or prevent a transplant. The one year survival rate for infants that receive a transplant is only about 50%. We need to put off the transplant as long as possible. The bigger and stronger Landon gets before a transplant the better his chances for survival are. The doctors here and the doctors in Boston are working together to convince Medicaid to allow the treatments in Boston. There is one woman at Medicaid that is making the call. I spoke with her myself, this week. It is obvious that she knew very little about Landon's case and almost nothing about the treatment that will save his liver and yet she still denied the treatment. She seems to have a closed mind and wouldn't even listen to my arguments. I am praying that the Lord will touch her heart and open her mind, before any more damage is done to Landon's liver.
Landon's test results, yesterday, were still bad. They were a little better than last Friday's but only a little. His billirubin and liver enzymes are very high. It is clear that Landon is developing cholestasis (blockages in his liver) and liver damage. Time is not on our side.
Other than all this bad news, Jeremiah reports that Landon is doing well and they have gotten in to a routine. Maybe Jeremiah can update the blog later. We will be going to see them, tomorrow.
We are looking over some materials that were sent to us by COTA, Children's Organ Transplant Association. They are willing to set up a trust for Landon so that we can begin raising money for Landon's care. It is obvious that the need is there and will be huge over the long haul. We will decide something soon.
EJ