New Plan

It has been a very long week. Spencer is up to 30 mL ( 1 ounce) at every feeding now.  He is having good input and output and the residual in his stomach has been very low (a good thing). Artie discussed the new plan for Spencer with the surgeon yesterday. The bad news is Spencer doesn't get to come home in between surgeries. The good news-so far-is that his surgeon thinks he is doing well and hopes to do his reconnection surgery a week from Wednesday/Thursday. That's ahead of schedule, thus one of the reasons for Spencer not coming home in between. Another is, since he is doing the surgery sooner, he wants to leave his central line in for after the surgery/during surgery. All of this means that the plan for Spencer to be home for good looks to be happening by the 4th of July. He will be a month and a half old by then, which is getting to be very, very hard for us. We just want everything to go as planned. A lot rests on the test Spencer will have sometime this week to check his bowels to see if they have healed and to make sure there are not any leaks. If this test checks out the way the surgeon is hoping then the above mentioned plan will go on...if not, we're in a bigger mess and who knows...I can't even think of that-but it will be very bad. Basically, Spencer is only digesting out of his small intestine-his ostomy bag is collecting everything from there. The other stoma he has, his mucus fissure, is to drain his large intestine. His large intestine is what was very damaged and where he had some of it removed-no food has been going through it for almost 3 weeks. This test will check to make sure that has healed up.

Please keep him in mind this week as he has this test. We need this test to show good things so we can begin the countdown to surgery #2 and finally bringing our boy home. At this moment we're doing everything we can to make that happen. Spencer is not receiving any type of medicine (he was supposed to get his hep B shot) that may give him a fever and push back surgery. The nurses have also told us not to have anyone up to see him because of the risk of him getting something. We are too close...   As always, we thank everyone so much for their continued support. We are really struggling with not having him home yet, but we are optimistic that things are going to work out for our little miracle.