Friday Morning Update

Tricia continues to do well. She did not sleep much last night, but hopefully they'll have her out of the ICU within the next few days so that she won't have to deal with the possibility of psychosis again. She did take a walk last night after I left, and she'll do some more walking today.

I've spent about an hour with her so far today. She is still having short-term memory loss...she didn't remember anything from yesterday, and she is forgetting things as short as 2-3 minutes back. This is common, and something we dealt with last time in the ICU. She is very thirsty (which is also very common), but she is not allowed to drink anything yet (they'll need to do another swallow study first).

It is mentally difficult for her to get used to the physical differences of having new lungs and the 8 chest tubes. Sensations that she has had for years are still there, but either now mean something completely different or are just phantom (imagined because she is so used to feeling a certain way). I told her yesterday, as she was trying to cough for the first time, that this is the clearest I have ever heard her lungs.

She'll be exchanging her G tube (feeding tube) for a GJ tube. The G feeds directly into her stomach, while the GJ tube will feed directly into her small intestine. This is critical, as it will bypass her stomach and allow her to begin "eating" again without the danger of throwing up and then aspirating (sucking stuff down her lungs), which would be very bad for the new lungs. She'll also, hopefully, lose a few of the chest tubes today.

They'll also be placing a new pic line, which is always an issue. I've explained to her nurse that they will not be able to place the line unless they take her down to radiology...hopefully they'll listen to me this time (as opposed to every other time the past 2-3 years/10-12 pic lines). Her nurse seemed to understand, so we'll see.

This ICU is incredibly more strict (and understandably so) than our visit to 8200 a few months ago, which is extremely frustrating for me. I'm used to spending any amount of time at any time that I want to with Tricia, being in the room with her during any and everything, watching out for her needs and making sure that I can advocate for her (about things like the pic line), so spending more time in the waiting room than in her room right now is very tormenting. Last night was the first time (ever) that I wasn't given the option to stay with her in her room.

Gwyneth is doing great. I'll be helping to feed her again in just a few minutes. She gained several grams last night, and she is getting used to her new feeding schedule. The nurses continue to be amazed at her physical strength and mental awareness.

Thank you so much for the thousands of comments and emails over the past few days. I haven't even begun to catch up with the comments, but I was able to catch up with emails.

My family (see sidebar links) continues to blog about this journey through their own eyes, and I encourage you to visit their blogs for some different perspective.

Thanks!!!

Nate