Family Meeting Report

First off we are sorry about the delay with the promised photos. The problem is almost resolved and will post them once we are able. The meeting went well and many of our questions and concerns were addressed. While the end result did not have us come to a crystal clear picture, the overall scene is much less foggy.

The main goals and objectives of this meeting were to discuss the short-term issues keeping Elias from going home medically and to form a consensus on a discharge plan. This has varied from person to person including time frames and course of action. There are only a few things keeping Elias in the NICU right now. The obvious is the G-tube and the other is nutritional. This is tracked through his weight loss & gain progression. It is a bit deceiving, because while hearing that Elias now weighs close to 7 lbs for his scenario and number of days of life, this is sub-optimal in terms of nutrition. This is something they want to watch for a few weeks. The G-tube leakage is of slight concern to contribute to this and discussion took place on what to do as a solution. The surgery team really wants to avoid another surgery and conclude that the placement of the tube is not ideal due to unstable circumstances during the procedure. However, with that said they feel as though replacing the G-tube is not what we need to do at this time. The suggestion was brought up by the neonatologist to change to a  GT/JT tube. This is an additional connection that allows you to switch from stomach feeds to Jejunum feeds. Elias' size  complicates that option, but it has not been ruled out at this time.  Elias could go home on continuous feeds, but it is not what they would like. Mainly so that Elias could be mobile and not have something connected to him all the time.  After a very lengthy discussion it was decided to bring in a GI specialist to survey and watch for about 2 weeks.

We also discussed in great length the discharge plan. They all knew coming into this meeting this was the hot topic and that we had concerns. We all walked away from the table with a much better understanding of everyone's point of view, including the medical teams view of ours. The group that was pushing so hard for the transitional facility finally were able to get a good understanding of how we felt and the things we saw or did not see in some cases. To the point that we are being asked to discuss this with the liaison nurse for the two facilities. As they stated these are things they need to hear, regardless if you are going or not. So we have agreed to sit down with her and have a meeting. Everyone had solid reasons for their points of view it was just airing them all out and really getting a grasp of everything. By the end of the conversation we all realized that there are outside influences that are beyond anyone's control, ultimately dictating the direction we will go. However, we agreed to be pro-active in doing everything possible to get as much done as we can in terms of preparation & education for the discharge date.  Once we get to that point we can see where things stand. The biggest hurdles we have right now is getting a spot on the Model Waiver Program.  The paper work is submitted and being reviewed. Approval is 99.9% likely, but when a spot on the list becomes open for us is what throws everything off, it could take weeks or even months. We also found out today that we will still need that letter of denial from the insurance company. We thought we had this resolved last week when the MWP director talked directly to our BC/BS case manager. A copy of the insurance screen that showed the specific exclusion was faxed, but it has been deemed insufficient. The MWP director thought that anything that showed this would be credible, but apparently not. So we are certainly hoping this does not turn into a resistance nightmare.

As we said in the beginning of this update the picture is clearer, but not crystal clear. We still have no idea when Elias will be able to come home. That is probably the most difficult thing to contend with. We have at least two weeks for the medical focus, but that, as you know, can change. We reflected back to something we said when Elias was born, "this is not a walk in the park we are taking, but a marathon we are running." It is beginning to feel like we are no longer running that marathon, but in "RUN FOREST RUN!!" mode. I guess we will just keep on running until one day, we will just stop...Just like Forest Gump! That will be the happiest day of our lives, because we will take Elias on his first car ride home!!