I left Winston this morning after sitting in on rounds with the surgical team and then with the neonatal team.

Here is some of what I learned, some of the questions that I asked and some of the answers.

Where do we stand with regards to obtaining the omegaven? The FDA probably will not give us permission to use it unless there are problems with the TPN. There are questions as to whether medicaid will pay for the omegaven. We do not know what the cost of the omegaven will be but it will probably be more than the TPN. We do know that the cost of the TPN could exceed $500,000 per year. The doctors here are not convinced that we need the omagaven.

I asked if any of Landon's small intestine remains. Landon's condition now is classified as short gut syndrome. Short gut syndrome is when a person has less than six feet of small intestine. A normal person would have about twenty feet. If you could call it small intestine, Landon has been left with about two centimeters or about 3/4 of an inch, virtually none. This is a new one, no gut syndrome

I asked if any of them had ever seen a case like this with the path we have chosen for Landon. No, when babies are born with conditions as severe as Landon's they do not survive. For all involved we are breaking new ground.

They are going to begin feeding Landon a small amount, this evening. He is showing signs of hunger pains and they want him to develop the ability to eat and swallow. He will not absorb nutrition from the feeding and it could cause some problems.

Kathy stayed with Landon today. Jeremiah and Shelly are returning this evening and I am going down in the morning. We have a conference call scheduled with the doctors from Boston at 11am and a family conference with all of the doctors involved in Landon's case at 2pm. We should have a lot better idea as to what to expect for Landon after the meetings.

During the drive home this morning I realized that with all the research we are doing all the plans we are making and all the work the nurses and doctors are doing that the outcome for Landon is still out of our hands. Our time with Landon is precious and could be much shorter than we would like it to be. As far as that goes any time that we have with our loved ones is precious. I also found out that sometimes it helps to just stop and cry.