Sunday, October 4, 2009


So Elias is out of the ICU and in the trach chronic care & ventilator unit. He was sent here to continue the weaning process off the ventilator. Before our transfer over the attending for the new unit came over to discuss things with us. I’m not really sure how to explain this so to make a long story short from his description of the plan it appears Elias could be hospitalized for quite awhile, as in potentially months. We sort of stopped him as we began to realize what he was saying thinking he was confused. It appears after talking to several different people here in the unit that indeed this is a reality. This kind of blind sided us a little and was very much a blow below the belt. We are hoping for some clarification tomorrow on how or why none of the doctors prepared us for such an event. Mind you much of the timeline depends on Elias and his cooperation, but if he does require support of some kind then we have to go through more training and have things set-up for home, which would include mandatory nursing, which we are still struggling to get and this will not trigger an automatic fix for that issue. So much like the NICU if he requires all that then we are here until all of that is set and finalized. We had no idea this was coming, we were prepared for potential Si Pap, but not all of this. We are also very concerned about what this means for Elias, his mobility, and his development with the added need for support. It has been a pretty emotional day for us. There has been some guilt, and anger, doubt and tears, but most of all love for Elias. We only want the best for him and will do ANYTHING to achieve it. However forcing him to potentially spend months in a hospital was not on the list of things to do. We are again sorry that many of you are finding this out here, but honestly we do not really know how to put into words how we are feeling, let alone trying to relay it over and over to everyone. It was hard enough to discuss and hear from the doctors. We know that in the long run things will work out for the best, but this was not the way we wanted it for him.

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