Family Conference

We had a family conference today with the surgeon, the nurses and the pediatric doctors attending to Landon. Here are some of the things that were discussed:
There is some concern because they have not been able to start the feedings as planned. Landon continues to spit up or vomit fluids from his stomach. They do not want to put anything else in his stomach until he quits spitting up because of the risk of him aspirating (sucking fluids into his lungs). He seems to be having trouble swallowing and is not sucking on a pacifier. They will evaluate him further and may need to help him by stimulating his swallowing reflex. He must learn how to suckle and swallow.
Landon is continuing to have bowel movements. This is good.
Lab results are coming in and they are establishing base lines to use to determine if anything is changing.
There was a lot of discussion about what needs to happen between now and when Landon will go home. Landon needs to begin feeding with no trouble or he could develop an oral aversion or lose the ability to suck or swallow.
He needs to continue to improve with no complications. They need to be able to administer TPN at home and need to find an infusion pharmacy to provide the TPN. They need to locate a home health agency to provide nursing at home. They need to locate a company to provide the equipment needed at home. Fortunately, Baptist Hospital has a team of social workers that are already working these problems out. At first some of these things will be provided by Baptist Hospital directly.
The Family must receive the training need to care for Landon. Some of that has already started.
There was again a lot of discussion about Omegaven and if we should push to try and obtain it. We seem to be coming to the consensus that we shouldn't. Omegaven is very new and the results are not in as to how good it really is. It is basically refined fish oil. What is being seen now is very promising and we will continue to watch. Since Omegaven is not approved by the FDA the only way we could get it for Landon would be to get him into a test group. There are no test groups in NC so it would have to be out of state and medicaid would probably not pay for it. Some children do very well on the TPN, for many years, and never develop liver complications. We will watch Landon closely. If there are any indications of liver problems we will begin pushing for the Omegaven. By then there may be a test group in NC. We discussed what may happen if Landon gets to the point of requiring a transplant. At this time he would have to go out of state and there are several possible hospitals to go to. We discussed the fact that they are developing a transplant program at Duke and that it may be to the point, in a couple years, that they can do the transplant there. The doctors at Baptist are going to make the transplant team at Duke aware of Landon's case.
We discussed Landon's anatomy and about valves that might have been left or removed. We also discussed what other kinds of complications might crop up.
There was some discussion about what Landon's and the Families' life might be like in the near term and the long term.
We were told that if any complications come up, at home, that Landon should be taken directly to Baptist hospital. Hopefully we can get him home and there will be no complications.
Unfortunately the conference call with the doctors in Boston had to be rescheduled, again, due to an emergency in Boston. It has been rescheduled for next Wednesday. They said they are really interested in Landon's case and want to learn more. The surgeons here have continued to talk to the doctors in Boston. One of the surgeons, on Landon's surgical team, worked with the doctors in Boston, last year.
Landon is still sleeping a lot. We are hoping that he will be more alert soon and that we can get some more video.
OK, one more thing, I have been contacted by the National Association of Men. If I make one more post like the one yesterday I will be asked to surrender my MAN card. No more crying or at least no more writing about it.

EJ