Sept 1, Saturday, Fun Day with Cousins and Keith Morrison

Stacy here.
Lindsey did great yesterday.  It was a long and crazy day.  They video taped us at breakfast, then walking in here to the hospital.  I ran up to Lindsey's room to help get her hair done and clothes ready for the camera crew to come in. They video taped anesthesia visiting with Lindsey about their job during the transplant surgery.  Dr. Hollander was called to come in and check the pump and had no idea a camera crew was here.  He walked in the room and was stuck here until anesthesia was done visiting with Lindsey, then the camera turned on him as he looked at Lindsey's pump and talked with us about her irregular rhythm.  Oooopps.. by the way you're going to be on national television.  He did a great job and rolled with it.  The camera crew then followed Lindsey to school and did some taping of her at school.  Her teacher is sure they are going to want to start a reality show staring him now (he is really funny). 

While Lindsey was at school they interviewed our social worker Mary Byrge. Meanwhile during rounds in Lindsey's room, we discussed the irregular rhythm, the alarm of the Berlin and her nutritional status.  It was decided that;
     
1) Her feeding tube needed to go back in.  She just hasn't been drinking enough Pediasure shakes and is losing weight.  She would have to drink 7 to meet her caloric intake goal.  She has been drinking 4 1/2 and that is with us following her around with it all day saying, "Here Lindsey take another drink." It seems to add a lot more stress to her day.  Jason and I were both in agreement that putting the tube back in needed to be done.

2) Her rhythm was okay, even though they don't like to see a lot of extra heart beats right in a row she kept her same heart rhythm and that was reassuring.  They are wondering if her extra heart beats are from not eating enough.  They have seemed to come on since her tube has been out along with the alarms on the Berlin.  With her not eating enough she gets dehydrated and there isn't the volume needed in her body to keep the pump filling like it should. So, they are going to do a quick echocardiogram to check for fluid around the heart.

3) Keep a close eye on her heart rhythm throughout the day.  Meaning that she has to wear two heart monitors when she leaves her room.  One the nurse can see who is with her and one that signals to 3 West so they can print out the irregular rhythm if it happens again. 

After her return from school, I broke the news to her that she was going to have to get the tube back in.  She was NOT thrilled at all, cried a little bit but was OK with it when I explained why.  The camera crew showed up again at 1:00 after lunch to video Lindsey doing physical therapy.  She did great.  She rode her trike, did an obstacle coarse and then spent the rest of the time playing the Wii Just Dance 2 with her sisters.  The crew requested that the parents join in so, we ALL played Just Dance.  It is amazing how quickly your shirt saturates with sweat, under your armpits when you have a camera in your face while dancing!

After therapy it was back to her room to do her feeding tube, while more interviews with the doctors went on. The feeding tube was not fun. I felt bad for her, it cannot feel good having a tube shoved through your nose into your stomach.  She did awesome though.  After the NG tube was in she had her dressing changed and it is looking a lot better.  The rash is almost completely gone.  The camera crew came back in to video Lindsey getting an echo and Keith Morrison talking with her.  She was really cute and did a great job.  Shortly after all the video taping was done, Jake and Wendy and their family showed up.  It was great to see them.  All the kids had been asking all day when they would get here and where were they at.  We visited with them for awhile and then we all went to bed.  I stayed here with Lindsey to prove to Jason that the Berlin only alarms when he is here.

Well, I was right!! The Berlin didn't alarm once all night, except right after I walked out the door later this morning.  Lindsey slept great and only was up once for a bathroom break in the night.  She had no irregular rhythms just some occasional misbeats, but not right together.  In rounds today they had nothing to report or change.  She has been acting wonderful!! Jake, Wendy and the kids came and we walked with Lindsey all the way to the Stanford hospital and to the water fountains.  Our furthest walk yet.  Jason and Jake took the kids to the beach at Pacifica.  Grandma is at the RMH with Gage since he has developed another cough and runny nose.  We want to keep him as far from Lindsey as possible.  Aunt Wendy, Brand and I are here hanging out with Lindsey playing Nertz and Wacky 6.

 Everyone at the fountain in front of Stanford.

Lindsey ready for her close up from the camera.