Zach came home from the hospital on Monday. He is on half TPN and half J tube feeds, it works out to being 24 hours of J tube feeds and 12 hours of TPN. So far, it seems to be working, he has already gained back a couple of pounds.
He went in Wednesday for some autonomic testing. We were greeted by Dr Fortunato (love him, he is so sweet) and another Dr, I think he was a nerve or neurogical dr...not quite sure. They hooked Zach up to a blood pressure cuff, this big pulse ox machine and chest monitors. He had to sit still for about 10 minutes while they monitored everything. Dr Fortunato was so good with Zach, he really didn't have to be in there with us but he sat and talked to Zach the whole time. They also drew about 55mls of blood to check some neurological markers.
This test is supposed to show if his nervous system has some issues with keeping everything on track. He said it might show something, it might not but they just wanted to try it. They might start him back on some different medicines for nerve problems.
Dr Fortunato is also supposed to talk to the Dr's at Johns Hopkins first of next week so hopefully they can get something worked out with Zach going up there.
On another note, Zach started running a low grade fever Wednesday. Yesterday it went up to 100 degrees so I took him into his Ped's office. He said his throat was kinda red, so he could have a little virus or it could be that his bone marrow is going crazy trying to make new blood cells from all the blood they took and that can cause a fever. Last night and today it is still hovering around 100.4-101 so we are just riding it out for now. He isn't acting sick but if it goes up higher, he will have to have some blood cultures drawn to check for infection. Since he has such a history of blood infections with his central lines, we have to monitor him closely and really at this point....any fever scares me. We have to keep this line in, he needs it to survive.
So we are going to stay at home, away from kids and all the sick people that go out.