Bad Test Results

It's none too soon to be getting Landon to Boston. We got the results yesterday from his blood work and it's not good at all. In fact it's very bad. He has abnormal results on almost a dozen test. His bilirubin has almost doubled and is well above the threshold to get him admitted to the omegaven research program. There is a possibility that he may need to be admitted to the hospital here to get some of these levels under control before he goes to Boston. We will be talking with the nurses today.
We have been researching the logistics for getting to Boston and staying there for a while. We have found several possibilities for lodging. While Landon is in the hospital the Devon Nicole House should do fine http://www.childrenshospital.org/patientsfamilies/Site1393/mainpageS1393P4sublevel78.html . When he is an outpatient we will have to find something a little bigger and with more privacy. It is expensive to rent anything in Boston. One good bit of news is that the airlines are running specials this spring and it is not terribly expensive to fly to Boston. Charlotte to Boston is as low as $59 plus tax and fees.
So far we have been able to keep the lights on and pay the bills. Family members, grandparents, great grandparents, aunts, uncles, and friends have been contributing, financially, for weeks. We have received several donations from church groups and yesterday received a donation from the employees of our local telephone company, Skyline Telephone. I know a lot of people want to do something for Landon and to help in any way possible. We have not asked for any financial help but we are quickly coming to the point that the need is there. Jeremiah and Shelly need to be concentrating on Landon and not worrying about keeping the lights on, keeping gas in the car, or even if there is enough money for diapers. It is very hard for Jeremiah to do the line changes by himself, Shelly needs to be there if possible. The short term doesn't worry me as much as the long term. I have talked to a lawyer about receiving contributions and about setting up a trust fund for Landon's care. For now we can handle most contributions as gifts. If there are a lot of contributions or the money builds up to a substantial amount then we will need to set up a trust. I believe that will happen. If the transplant team evaluates Landon and decides that he is a candidate for a transplant then there is a nonprofit organization called COTA, Children's Organ Transplant Association, http://cota.org/COTA.php that could set up the trust fund and help with fund raising.