Pierce - Age: 12 days

All seems to be going well, as well as can be expected. He is tolerating being on his side with his head turned sideways. He hates the oxygen tube that is in his nose. He has figured out how to grab it with his hand and pull it out and put it in his mouth. When I came in this morning, the nurse had taken to taping it to his face nose so that it wouldn't come out. He is not happy about that at all.

I hung out during rounds and they went over everything that happened during the last 24 hours and there were a couple of things that were of note. First, they upped the amount of air that he is getting through the nose cannules (sp?) because his CO2 level was a bit high last night. They are going to start checking that daily now to make sure that everything is okay. The second thing is that they were not sure that the Plastic Surgeon would do the tongue lip adhesion surgery because of the couple of concerns that the neurologist had about his brain and the 'low tone' or 'weakness'. I asked why and they said that they would check with all the doctors, but they thought that it wouldn't make a difference if his brain is not sending signals to his muscles.

After rounds, Dr. Oh came in to talk to us. He is the Plastic Surgeon. He sat and discussed the options with us for Tuesday's surgery. Overall, I think that we will go for the tongue lip adhesion surgery and then if that doesn't work, we can do the distraction of the mandible. Last resort would be a trachiostomy (sp?) which we think should be the last resort unless there is a serious concern about his trachia. Before they do all this, they need to take a CT scan of his head and they are going to do a camera of his nasal cavity and back of throat through the nose.

As of 15 minutes ago, the came to take him for the CT. As they said at night with the MRI, he has to be on his back (ultimately, the MRI was done with him on his stomach) even though they know that he doesn't do well on his back. Transport was there and got him all set up with a device that holds the tongue forward to allow breathing. We let it happen even though we don't believe it was completely necessary. He is down there now and should be back shortly.

Hopefully soon this will all be a distant memory.
Ben