Actually, he has been accepted to become a patient of The Children's Hospital Boston which is part of the Harvard Medical School and to participate in the omegaven program as well as the short bowel group. This is fantastic!
Jeremiah and I each spent several hours, today, talking with the doctors and nurses from Boston. We have been sent the forms necessary to begin the process to get Landon to Boston. Tomorrow we will be gathering the information needed and faxing it to Boston. Landon could be on his way in a week or so. The thing that could slow down the process would be a problem with insurance. Hopefully that will not happen.
The mortality rate for babies with short bowel syndrome is very high. One reason for this is that babies are not referred to short bowel groups or for transplant until they are very sick. They are happy to receive Landon to the omegaven program and the short bowel group in an attempt to intervene at a young age before Landon develops liver damage and or becomes sick from other complications. This could make a huge difference in Landon's life.
Since Landon is not as sick as other children that go to Boston we were told that he might only be in Boston for a couple weeks. He should be able to fly on commercial flights. They will send us letters to show the airlines that will allow us to board with Landon on TPN.
The plan is to admit him to hospital for 48 hours to do the necessary test, get him started on the omegaven, and to evaluate him. We also want Landon to get his first evaluation for a possible transplant. After that he will be released and will remain in Boston, as an outpatient, for a couple weeks. Then he will be sent home with the omegaven. He will have to return to Boston every couple months for check-ups and more test.
I'm ready to go !
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