Where We Are

Elias will remain in the hospital overnight again and a decision will be made based on his performance with the feeds tomorrow. They are running pedialyte today and overnight and he seems to be doing better, but still agitated a bit as the fluid is pushed in. They took out his G-tube for about 20 minutes and let the stoma tighten a little, what that was for we are not really sure, but it was apparent that the resident last night did not truly understand the issue. We sat down with the surgeon today and briefly discussed our concerns and disappointment, as well as our thoughts on the new diagnosis and the role it now plays in this never-ending issue. He is going to check a few things, but there is talk of putting in another G-tube mic-key button. Apparently there is another one out there slightly longer than the original mic-key. We are satisfied for the moment anyway on this potential solution. We are all in agreement that we think the issue with the feeds intolerance is just the stoma site being sore from the tube coming out so many times in such a brief period. The will start back with his breast milk in the morning. There are a few things pending, but he could come home as early as tomorrow, but as usual we are not holding our breath.

We did see many of our friends from the NICU, who were excited, but disappointed to see us. Everyone, that came by to see how things were going, felt as disappointed & frustrated as we did as to the reason for our quick return. Elias was still very tired and visibly uncomfortable. Even Donald Duck got too few smiles today, so you know there is a real problem! I honestly do not know how we are managing all this right now. It is emotional overload, but somehow we are keeping our wits about us and moving forward, trying to laugh at as much of this as possible. Thank you all for the well wishes, calls, comments, and emails! Yesterday, was certainly not easy and today as we made that all too familiar trek into the city, it was a somber reality we did not expect to relive so soon. Thank God Elias is such a strong little man!