9:26am

These were taken last night.

Like his 'do'?


He always has a smile.


We are so lucky to be Xander's parents.

8:00am

It's barely 8:00am and Xander has already been ordered a chest x-ray. Looks like the fluid is coming back. NO! Not so soon. They have been decreasing one of his diuretics so maybe if they increase it a little than it will take care of the problem. I just really hope they don't need to tap him again before transplant.

October 7 - 9:36pm

Not much action tonight which is nice. I like it quiet and calm. I'm sorta watching the presidential debate. Such crap. You can't believe a word either of them say.

Oh, Xander doesn't have to have blood drawn tonight! He's had it drawn every day since we've been here. I'm glad they decided to give him a little break.

Have a good night.
xxxooo

6:14pm

Arrrggghhh! We won't know anything until tomorrow. I guess the biopsy team wasn't able to get it done today. Bummer.

Xander's transplant surgeon stopped by. He said he hopes we get a cadaveric liver before we have to use Ron's. He's asked for more PELD points in the hopes that we would get 'the call'. They've asked for 30pts. That's very high so we could get 'the call' at any time.

We're not sure how to feel about that. Guess we'll see what they say about the biopsy tomorrow and go from there.

10:31am

Xander pulled his ng-tube out. Silly boy. I had to put it back in. I prefer to because I know how to do it quickly and with the least amount of screaming....or so I thought.

Xander just happened to pull out the tube when they were checking his IV. They're not sure his IV is in correctly so they were messing with it and he was crying up a storm. :( It's painful. In the midst of the crying, he pulled the tube. So I decided to put it back in for him rather than letting someone else.

BAD IDEA!

He was so mad from the IV testing and then tired from all the crying it wasn't a good scene. All the other parents must have thought we were torturing him. The good thing is that as soon as I got it in he passed out.

Ron called his transplant team and hopefully we'll hear this afternoon.

Oh and Michelle is back!

6:38am

Man I wish I could sleep through anything. That talent would come in very handy here. I had to get up three times last night because med. pump alarms were going off and nobody was coming to shut them off. The nurse is very nice but she's not paying attention. No matter. In an hour the new shift will be in. Hoping we get our favorite nurse today. Her name is Michelle and she's very good!

I'm off to e-mail Ron's transplant doctor, Dr. Andy Cameron. He's VERY impressive. He came by yesterday and put some of my fears to rest. I really, really like him. I also think he's younger than me. Believe it or not. lol I can't help to always think that all great doctors have gray hair = older. Or is that mature? Seriously, I don't care how old he is, only that he takes care of Ron.

It's a crowded room today. Things are already hopping!

Talk to you later...

October 6 - 7:36pm

Ron had his liver biopsy today. I guess it was quite painful. He read that it was a dull pain but that wasn't the case at all. He didn't feel anything then all of the sudden he felt a very sharp pain in his stomach. Owa! Sounds awful.

He is at Children's House tonight chilling out. He's still got some pain from the procedure. They can't numb your liver unfortunately. So he'll be out of commission for the next day or two. He was instructed by his docs to take it easy and not to lift anything that weighs more than 8lbs.

They said it would take three or four days for the results. Let's hope it doesn't take that long.

Until tomorrow.
xxxooo

3:21pm

Ahhhhhh! We didn't have access to any internet for a while. I was panicking there for a while. It reminded me of the South Park episode where they wake up and have no internet. (That was a good one.) I almost packed up and headed for the closest Starbucks. I was just having a hard time deciding which corner was the closest. haha

So it's D-day. The last of the testing for Ron. He's having the biopsy done right now. He is such a wreck. He wants so bad to do this for Xander.

If we find out anything today, I'll let ya know. Most likely it will be tomorrow.

October 5 - 4:28pm

It's been a hectic day. I was with Linc for most of the morning. Then I drove him up to Hopkins where Ron and Mom were. We realized we couldn't let him in to see Xander. No healthy kids are allowed into the floor. Boo. I was hoping for a quick visit. So we ate lunch and then my Dad showed up to hang out for a little while. When he left we went to get the groceries and the clothes I washed. Now I'm back here with Xander just putting my feet up hoping it will be a quiet evening.

Hope everyone had a good weekend. We did!
xxxooo

October 4 - 8:27pm

We met with the docs this morning. Everything is holding, which is great. They are working hard to keep the fluid away until transplant without tapping. I mean there are other things they are concerned about but that is priority number one.

Ron said Xander had a little fun today. Since we are on the floor, he's able to get out of his crib some. He was able to get into the exersaucer they provided a few times. He was loving it. I can't wait to see him out and playing. Tomorrow.

I got to see Linc today. Gosh I miss him. He's such a little director. Moma, come here. Moma, sit down. Moma, I want a cookie. I can't imagine where he gets it from! haha I have to own up to that one.

Anyway, back to Hopkins tomorrow.

Don't let the bed bugs bite.
xxxooo