Feb 21, Thursday, One week ago today

Started off great with glimpses of 'Lindsey' poking through. She started to joke a little and be her 'usual' self. As the day went on she slowly reverted back to the emotional mess. They are still keeping a close eye on her for seizures and other reactions to the steroids. They have stopped the cyclo that was causing the PRES but now that she is on Prograf, they are watching her for the same thing. A few times Stacy and I have wondered if it was happening, but so far, so good. Yes, it can be a little stressful.

At 2:30 she went in for her first biopsy. She was pretty nervous. We talked to her about being 'biopsy brave'.  When Sierra goes in for her biopsies, she does them awake with just a local anaesthetic. When she does them awake the recovery has been much quicker. So, for years when the kids needed to do something hard or challenging we talked about being 'biopsy brave'.  Lindsey of course did her biopsy asleep, but she was a bit scared going in.

Biopsy was done and she did well. All we know for now is her heart pressures are fine. I will NEVER take that for granted. Tomorrow we will find out the biopsy results. If (and that's a big if) she has a zero, they may turn down her steroids a little. Of course if there is raging rejection they will hit her with 3 days of IV Steroids. And if it is mild or moderate rejection, they may or may not do anything, just depends.

Sierra did school at the hospital today.  She sat where Lindsey usual does.  Her shoulder is still pretty sore from the port placement. Tomorrow she has the next treatment at 1:00 pm at the Short Stay.

This morning, Mary Alice brought by Lindsey's Berlin. This was the final farewell. They are shipping traeh nilreb back to Texas for servicing. It was interesting to see the machine that was our daughters lifeline, just sitting there, lifeless and quiet. Mary let Linds turn it on, program the settings, adjust the hoses, and run the override switches. Basically everything that was forbidden before.  For a few minutes we sat and listen to the hum and ticking of the machine. In a way she was saying good by to a major part of her, a way of life for 230 days. Thanks Traeh nilreb.

I am just now starting to get back into my work. This week has been a whirl wind of activity, and today was really the first time I have had the mental capacity to think outside this room. It actually felt real good. I was originally going to fly home last Monday for 2 weeks but have postponed my flight home twice. For now, I am planning to fly home Saturday and spend at least a week.  But who are we kidding, we are just going day-to-day.  Stacy's Mom is coming Saturday to spent the week, so we should be good.

Here is one for ya. This morning between Midnight at 6:30 am someone stole the buggy off the back of our bike. We had the bike locked in front of the RMH and some low life had the nerve to steel it.  What exactly are they going to do with it? Sell if for drugs? Hook it to your bike and take your own kids in it. It was at the RMH!  Wow, what a guy?  We used that thing for groceries, Gage, and transfering clean clothes and supplies between the RMH and LPCH.

Tracy and Kim, 2 wonderful nurses from 3 West, just came by for a fun social visit.  They sure brighten her day. Earlier Shannon came by and did the same thing. Those nurses are family to her, sure means a lot when they make the extra effort to brighten her spirits.

My Mom is at the RMH with the kids. Haven't seen much of Hunter or Megan.  Once we get moved up to 3 West, we can finally start living as a family. Just been a crazy week.

 'English' Tracy and Kim P

Lindsey heading in for Biopsy

Later Traeh