Hello to all! This is DeeDee again. Since we are able to be with Clay 24/7, it's hard to remember all the events in a 24 hour time period. I was allowed to help Clay with his bath yesterday, but not today (depends on the tech). He came back from his bath sitting on a rolling chair with a smile on his face; so, the bath wasn't so bad after all. I had asked the doctors last Friday if they could take Clay off of some of his anti-nausea medications. Since he was vomiting with the medicines, I didn't think it would hurt to vomit without them. I didn't want so much medication in his little body, especially if it didn't seem to be helping the problem. The doctors said that they would discuss it. A day later, a gastro doctor from Children's hospital showed up. He ordered for Clay to be taken off all of the anti-nausea medication for three days. If he is still vomiting, after three days, he will be given a different medication. Clay went for a ride around the BICU today and waved to everyone. One of the ICU nurses noticed that Clay's feed tube was out too far (as he drove past her in the little jeep). The doctors came to his room this afternoon to see if they could push it back down. This was uncomfortable and made Clay gag. An x-ray showed that the tube was not down far enough. The feed tube will be removed for a day. Clay may not have to have the tube put back through his nose, if he is able to keep his liquid down. We are hoping for no vomiting during this time. He will also get a smaller trach tomorrow.
He had a lot of fun with O.T & P.T today. It is amazing how independent he is already becoming. I'm going to get some rest. My mom is at the hospital tonight and I'll arrive early in the morning to take over. Thanks for all your encouragement, it is such a help to us.