Today was a busy day for all of us. We has a very long care meeting today and discussed many topics. Ryan got to visit with the child life specialist today and she reassured us that at least he is coping with everything that has been going on very well.
Unfortunately Sam is not fairing quite as well. He is almost back to his usual self today, but we still are not any closer to finding out what is really wrong with him after all of this time. Today his doctors, both in Neenah and Milwaukee, along with us have made the decision to move him to Milwaukee. Sam will be transported down there on Monday morning. This move will put him closer to the specialists and give them an opportunity to see him first hand and pull other specialists in more quickly when needed. We will begin by working with a gasrto intestinal specialist. They have prepared us for the fact that we still may have a long road ahead of us. This move is definitely what is best for Sam at this point, however difficult it may be for us to have him so far away from us.
Many of the nurses in Neenah have grown very attached to Sam and have really taken a personal interest in him. It will be very hard for us to let that go and move into greater unknown.
We were really hoping to avoid this move and kept holding out hope that the next thing that they tried would bring us some answers. Deb and I have will both be out of vacation time by the end of next week and are still trying to work out how we are going to try to manage being able to spend time in Milwaukee to be with Sam. Both of us would like to be able to spend as much time down there with him as possible, but we also need to be able to still support our family at the same time and simply can not be in two places at once. We will now just have to try to add another layer to the exhausting balancing act that has become so routine for us.
Deb and I have also begun the process of getting in touch with support groups and counseling to help us deal with everything that has been going on. We have both come to realize this week that we simply can not keep going like we have been the past few weeks and everything just hit us like a ton of bricks over the weekend.