December 30 2011

So not the best day yesterday. After getting home from the port removal and g tube changed, we started up the feeding tube only to find the new one is leaking. They changed it under anesthesia because of what happened a few months back when they went to change it and it was off track and he went through hell until they finally had to put him out to do it. He got several immunizations including the dpt. So we used the feeding tube and had a washcloth to catch the leakage and then our plan was to go in in the morning for a change. We kept it without food or drink after midnight in the event they needed to put him out.

He was a mess anticipating the worst.

So we are driving in yesterday and he is telling me he is really thirsty, understandably so. So once we got in and were at the elevator after a long walk, he is feeling worse, and I am thinking he is dehydrated. We get up to the floor and he is not feeling good. His heartrate was high and his pressure was low. And then the fever comes. He does this huge cough in the exam room and they swab his nose and to see what that is from. So we start some fluids and his blood is taken. His counts come back pretty good, not really dehydrated. We checked the tube and it is not leaking. Surgery checks in on us twice and we find out that he cannot get anesthesia today. So he starts perking up little by little. Finally the dr that changed the tube yesterday convinces us that she can do it in under 10 seconds, which she does but he is a mental mess anticipating the worst from his prior experience. Two drs come in and set up. The change is not painful, just feels like your insides are being pulled out through this hole in your belly. He is silent. It is done and it is successful. He starts to cry once it is done. It was so stressful last time and he was so nervous. He talked to his dad and the plane was switched to Saturday supposedly. Then we are preparing to come home and his regular drs come in to say he has rsv virus. This is contagious and could get worse before it gets better. He is not happy and this was the day we shared a water bottle, great! So now we leave and he is upset about missing his trip but he really can't go. So he tells his dad and that is canceled and we make the ride home. His fever spiked again but he does not seem any worse. He is still sleeping of course, so we hope the day is ok...wish us luck and stay healthy. Hey, I am always better when he is here, but not when he is sick. :(