Sept 6, Lindsey's PVCs and Sierra's Biopsy Result

8:30 pm,
Stacy dropped Lindsey off at school and headed to the airport to pickup Betsy and Logan Nedrow (the surprise the kids don't know about).  As she is getting to the airport she received a call from the doctor regarding Lindsey's PVC's (irregular heart beats).  The PVC's have worsened and have gotten to the point that Lindsey needs additional IV therapy.  They pulled her out of school and took her downstairs to the CVICU to start a picc line and IV medication that should help stabilize her heart rhythm.  She will be in the CVICU for at least 3 days then hopefully back to 3 West.  I am so grateful they have several options to help with this. I counted it up and she has been 42 days on the 3rd floor.  She is still looking and acting great, no fevers or tummy aches.  Hopefully they need to catch and fix this PVC issue before it starts affecting her clinically.

Couple of hours later she received a call from the Heart Clinic regarding Sierra's biopsy results.  She got a 1B.  Rejection is graded zero - 4 with 4 being the worst.  Meaning she has some rejection and her long streak of zero's have come to an end for now.  They are going to increase her prograf (anti rejection med) and do another biopsy in a month.  This is NOT the news we were hoping for.

It was pretty hard to receive these phone calls from Stacy as I am traveling back to Oregon. Makes me want to turn around and head back to California.  Feels pretty lonely here in our nice big home.  Hard to imagine our family could be home someday.  Just need to remember the highs and lows.

Lindsey showing off a push up in PT

Sept 5, Sierra's biopsy

Another great day for Lindsey.  School, walks, play room, and a bit of cheese burger tonight.  She enjoyed skyping with her class back home.  Hopefully they can do more of that.  

Sierra has had a busy day. Blood draw at 7:30 am. School for a couple of hours, then back to the hospital for a 10:30 biopsy.  This was an annual biopsy which is more extensive than the normal 'run of the mill' biopsy.  They go in through the leg rather than the neck,  look at her heart pressures and coronary arteries, and take heart samples for both cellular and antibody rejection.  In a normal biopsy they just take a sample for the cellular rejection and none of the other stuff. 

In the past Sierra has had elevated heart pressures and signs of coronary artery disease (or shrinking of the coronary arteries).  Coronary artery disease is one of the main reason kids have to have another heart transplant or worse, don't survive.  We know of a child that was transplanted shortly after Sierra who has passed away due to coronary artery disease.  So, that is why Stacy and I and other heart parents get a bit anxious around annual biopsy time.

Having said all that, we had Dr Perry. As I said on Facebook, Dr Perry is a man of few words.  He does an incredible good job, he just doesn't have much to say.  According to Dr Perry, Sierra's arteries and heart pressures look good.  That's it... just 'good'.  Stacy and I want to know is it better or worse or the same as last year.  They are just 'good'.  So we will take 'good'.  We LOVE 'good'.  Tomorrow we find out the results of the cellular rejection and in a week or so we will find out the results of the antibody rejection.  If all is well they may even drop the predisone.  Predisone is the steroid that may be causing the slow growth and puffiness around her eyes.

After her biopsy, Sierra started her second dose of the IVIG.  This is a 12 hour IV to fight off the antibody rejection.  She had this same treatment 3 weeks ago and will probably get the same treatment in a month or so.  So tonight for Lindsey's walk we went down stairs to the Short Stay unit to visit big sister.  It was weird for Lindsey to be visiting her sister rather than the other way around.  At one point today around 1:00 pm both Sierra and Lindsey were getting echos done on their hearts at the exact same time.  You just don't see that everyday. 

Tonight I am getting Lindsey to sleep, then giving Sierra a ride home around 1:00am. Stacy is at the RMH with the other kids.  Haven't heard how our friends baby with the double Berlin is doing.  Hopefully good.

Megan is loving the volleyball skill evaluation.  She really wants to be on the 'competitive' team, not the 'just-to-have-fun' team. She thinks the practices are pretty basic and that she made it. Kids still don't know about Betsey and Logan coming to stay, so don't be blowing the cover! Should be an exciting day tomorrow.

Well that's the report. Another great day. Heading home tomorrow.

 Stacy holding Tristen, with Mary Burge, (our wonderful social worker) and Stephanie (Tristen's Mom)

Sept 4, Back to school

9:00 pm.
Lindsey is having a run of good days.  She did school, PT and walks all in a good mood.  We watched the 2 sisters of the little baby going in for the Berlin I mentioned yesterday.  The baby ended up getting a double Berlin put in ( a pump for each side of the heart).  Hunter had a good time playing with his new friends, Keli and Lynnea.

Gage had a heart appointment.  He checked out fine and they turned up his heart med.  Tomorrow Sierra has her biopsy and IVIG infusion.  She will be pretty wiped out. 

Megan did good (I guess) in her volleyball skills testing.  She wants so bad to be on a 'good' team.

John and Kelly's baby Chloe was moved up to the 3rd floor. She is 9 months old, has the same heart disease as Lindsey, and has been on the Berlin for about 5 weeks.  We will get some good pictures of Lindsey holding Chloe.  Tristen, Stephenie and Kade's daughter, has also been moved up to the 3rd floor.  There is quite a bit of optimism floating around the unit these days.

At school, Lindsey received balloons and a gift bag from a secret admirer.  She was and still is excited about that one.  She is also excited to skype with her 3rd grade class on PV.

I am heading home Thursday to get some work done.  Really don't want to leave the family but need to for now.



 Lindsey and Tristen (NOT on the Berlin)

    Hunter and Keli, one of his new friends.

Sept 3, Day 75, Labor day

Lindsey has had a great day.  Since they have minimized her blood draws, her blood count is up to 36 from 23.  That's much better!  We took a long walk down to the Stanford Fountains and looked for money in the water. Took about 40-45 minutes. Still having the pvc's but nothing to alarm the doctors... yet.

Sierra and Megan went with to SF and China Town with the Zangers from the ward.  They have girls the same age as our girls so that was nice. 

Mom did some shopping and playing with the boys and I have been here with our Princess.  To be honest, I had a tough time this morning.  Labor Day is very enjoyable to me, getting firewood, activities with the kids, working on the shop, camping, doing the stuff we all like to do. To say the least, this year has been a little different.  I'm definitely not complaining because......

There has been some other pretty tough stories here lately. For example, a little baby too sick to be put on the Berlin has lost all his fingers on both hands from blood clots relating to the ecmo machine he was on. He has restricted cardiomiopathy which is similar to Lindsey's, and has been running super high fevers.  Hopefully they can get him stable enough for the Berlin. So if I am complaining, I better knock it off. This is just one story. There are tough stories all around us.

Kade and Stephanie's baby Tristen has been moved up here to the 3rd floor.  They are pretty excited about that. 

Lindsey is excited to skype with her 3rd grade class back home.  Molly, when would be the perfect time for you?  Lindsey has class from 9:30 to 11:30 and 1:00 to 3:00 everyday.  Most of the time she will have PT at 3:00 but that is flexible.  She would love to skype during class hours or during the lunch hour.  Just let us know.  My computer is setup and ready (I think).

Sept 2, Jake, Wendy and Grandma heading home

Very enjoyable Sunday.  She continues to do great. Grandma stayed with her while the rest of us along with Jake and Wendy's family went to church.  At 8:00 this morning Dr Katz Meada came by with his 7 year old daughter Emi.  He wanted to bring her by to introduce her and bring some books for Lindsey to read.  It was very nice.

Our nurse Kimberly was really busy with another patient today.  They had the 'crash' cart in there and it was pretty serious.  There is some major stuff that goes on here at this hospital.  Kade and Stephanie's baby Tristen is doing better.  Getting closer to coming up here to 3 West. 

Jake, Wendy, their kids, and Grandma left for Oregon this afternoon.  It was really nice to see them.

Tomorrow Sierra and Megan are going to SF with some of their church friends for the afternoon. Hope they have fun. This week Gage has a clinic appointment on Tuesday, and Sierra has a biopsy and IV treatment on Wednesday.  It is the Annual biopsy where they will look at her coronary arteries and heart pressures.  Hoping for the best there.  I am planning on going home Thursday to do some office work.  I really don't want to leave but need to.

Tonight Lindsey has started throwing a lot more pvc's. Hopefully they don't develop into anything. (The worry never goes away)

But it has been a great day. One for the good guys.

 Emi, Lindsey and her new books

 Emi, Dr Katz Meada, and Lindsey Sunday morning

 At the beach on Saturday

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.