Quick Update - May 30, 2015

I forgot to mention, as of yesterday, Sierra has moved up to a 1A status.  This doesn't move her name up on "the list", it just makes her need for a heart more urgent.  So, if there were 2 people the same size and blood type, the 1A status would get it before the 1B.  She is not "feeling" any different on the milranone, but her appetite has been a little better.  She had a good day yesterday.  The milranone is doing what they were hoping it would do.  She peed out 1.9 Liters of fluid and her weight was down the same amount.  The kidneys are handling the diuretics well.  We are not speaking discharge yet, they want to continue to see the positive trend before releasing her.  It may be another week at least.  When she is discharged, she will go to the RMH on the continuous drip of milranone.

Last night was the annual hospital prom.  This is a pretty amazing event here at the hospital.  Right up there with the Halloween festivity that they have.  The staff at the hospital school start planning this in the fall.  They put a lot of work into it.  We were able to go when Lindsey was here, right before we went home.  That was our first prom that we've attended.  Last night was our second.  It was "A night at the Oasis" theme.  It was decorated amazingly well.  They had all kinds of booths set up,  games, food, crafts, pictures and a DJ playing for the dance floor. They received tickets and then cashed their tickets in at the end for prizes (very nice gifts).  What was so neat about this event, was to watch all of these kids, that at some point had attended the hospital school because of an illness. To see these kids healed and looking healthy.  Quite a few kids we recognized from when Lindsey went to school there, 2 years ago.  It was quite humbling and encouraging.  Sierra went with her friend Alex, and my date was Gage.  We had a great time.

Today we have just hung out, wishing we could help with all the projects there are to do at home.

Me and my date right before the dance.

Sierra and Alex, exchanging flowers. 

This is Gelina and her little brother.  Gelina was getting treatments for leukemia while Lindsey was in the hospital.  They were in school together the whole school year.  I almost didn't recognize her with hair. 

Sierra trying her hand at a ball toss.  Gage watching as he was ready to do it next. 

Me pinning my dates boutonniere on him. 

Gage's prize last night was this "Hulk."  He slept with it and then put it in the shower with him and soaped it up.  It is one clean "Hulk."

Hanging out outside this morning.  Proof to Jason that we are not just sitting in her room all day going stir crazy.

Inpatient Again

Sierra is inpatient again.  Tuesday we were walking home from school (a short distance - about a 15 minute slow walk including waiting at lights).  She got out of breath and had to slow down.  At one point she felt dizzy and nauseous.  We made it back to the RMH,  she took it easy and felt better.  Wednesday we had a clinic appointment and the doctors decided it was time to trial her on Milranone.  This is the medication that I thought was not an option.  They explained that sometimes it is an option.  Each patient reacts differently.  Some kids it makes them sicker and some get better.  So, to explain their reasoning better, imagine a window.  On one side of the window is Sierra not feeling well because they have pulled off too much fluid.  On the other side of the window is Sierra not feeling well because she has too much fluid.  This window has slowly been narrowing, if not over lapping at times.  As they try and pull fluid off her with a lot of diuretics, her kidneys say "Ouch."  If she has too much fluid she is tired, short of breath, nauseous and no appetite.  The goal is to get her feeling good, waiting for a heart.

They admitted her to the PICU Wednesday afternoon.  IRONICALLY, it was the exact bed she was admitted to for the first time at LPCH   9 years ago.  They started a PICC line, which she was not crazy about.  They had to do it with 2 attempts and no anesthesia.  She was not happy.  They started the milranone and watched her there for a few hours to make sure she tolerated it alright.  By 11:00 PM that night, she was up on 3 West.  We were very excited that we didn't have to be there longer than we thought.  She has been on the milranone for 2 days now.  Not a lot of difference felt, but they are upping her diuretics to pull off about 4 more lbs of fluid she is holding onto.  They will see how her kidneys tolerate this.  If all goes well, she will stay on the milranone until transplant and, she can be on milranone outpatient at the RMH.  It is a little to early to tell if it is helping yet.

This has been a different heart failure than the past 2 times.  Usually I can guess or call what the doctors will do next.  This one, I feel completely in the dark.  I just can't call this one.  However, I know that if this milranone doesn't work, we have some very dark days ahead of us.  On a lighter note,  HAPPY BIRTHDAY JASON!! I love you and wish we could be home to celebrate with you.  Tonight is the hospital prom, so Gage and I will go together and Sierra will go with her friend Alex from the RMH.  I will post pictures later.

Outpatient With a Wonderful Memorial Day Weekend

Sierra was in the hospital for probably her shortest stay yet.  It was a mere 24 hours.  We were very happy about that.  Her diarrhea has subsided, but now she is really retaining the fluid again.  So, they are slowly going back up on her diuretics again.  All a balancing act. 

Jason, his sister Garrity, her son John and all the kids came to California for Memorial Day weekend.  We were all so happy to be back together again.  My how our room at the Ronald McDonald House shrunk with 7 people instead of 2.  Friday we enjoyed being together for the day.  Everyone came to the hospital for blood draws and to say "hello" to nurses and school teachers.  Lindsey stayed at school to do art with Sierra.  We went to the movies Friday night and enjoyed every moment. 

Saturday, Megan, Hunter, Lindsey and I ran the 5K color run in San Jose with our friends here in Palo Alto.  Megan was excited to see her friends.  Hunter ran the whole race in his levis and cowboy boots. We hadn't planned on having him run it, but our friends had an extra number.  Jason, Sierra, Gage, Garrity and John cheered us on from the sidelines.  That was our first color run, and it was a lot of fun.  Very easy going and casual.  After the color run we hung out at the Ronald McDonald house, and then left that afternoon to meet Sierra's donor family. 

Your probably wondering how this came to be.  When Sierra received her heart in 2006, we wrote a letter to the donor family to thank them for their gift.  We did receive a letter back from the maternal grandmother telling us vaguely that his name was Nicholas and he was 4 years old. On the one year anniversary, we wrote another letter, but this time did not hear anything back.  Understanding their need to grieve, we did not write again.  In June 2013, our Dateline story debuted.  Watching this Dateline episode, was Nicholas's fraternal grandmother, who had been wanting to reach us for some time, but was never given the information to find us.  She contacted us through emails and we had planned on meeting them at some point.  However, with Sierra back on the transplant list, it moved up the urgency of the need to meet. We had planned on meeting them in Oregon, where we were both from, but then we received the news that Sierra would have to come to California to wait for her transplant.  This amazing family, drove down to California to meet with us, so they could see some of Nicholas still living in Sierra. 

It was a most precious and emotional experience for everyone.  It was so neat to learn about Nicholas and the cute, fun loving boy he was.  It was sad and heart wrenching to hear of his tragedy. I hope it was helpful for his family to hear of the miracle that was placed in our life as we placed the events in a timeline.  Putting together the missing pieces that we had long wondered how it worked.  From the time his parents made the decision to have his organs donated, to the time that his precious heart went into Sierra.  It was good for Sierra to meet them, and for her to see their love for her.  She has felt guilty that she was not able to keep Nicholas's heart.  That has bothered her since she learned she needed another transplant.  Nicholas's family was very reassuring and understanding for her.  Sierra needed to hear that they did not blame her and loved her for keeping his heart for the almost 9 years that she has had it.  It was a priceless experience that we will always treasure.  We were able to go out to dinner with them on Sunday and just enjoyed being around them, visiting with them and getting to know them.

Monday came way to quickly, and we had to say good-bye for now to Jason, Garrity, John, Megan, Hunter and Lindsey.  We kept Gage with us for entertainment and to help lessen Jason's hectic schedule at home.  Now he only has 3 kids' schedule instead of 4 to juggle.  We will finish out these last 2 week of school and then reevaluate our plan from there.

Cute little Tristen giving Sierra and Megan a hug. 

And this is how the boys play.  

The tree swing behind the RMH is still there and in working order. 

Gage wasn't as excited about it as his siblings were. 

"The Team" before the run 

PK, Mia and Megan 

Now our turn to go.  You can barely see Hunter next to me in the orange shirt and cowboy boots.  

Caught up to Lindsey.  She wasn't crazy about the "run" part of the color run. 

The finale. 

Chalk still flying all over.   

Our new friend Alex at the RMH.  Had a heart transplant 6 years ago and is now there for cancer.  Not the kind caused by transplants.  One amazing kid. 

Nicholas's family 

Nicholas's fraternal grandma and grandpa 

Nicholas's half sister and brother and stepmother. 

 An awesome collage given to us by his family.

Status - Inpatient

There has been quite the happenings since the last blog update.  Sierra has had some good days and some bad days.  The headaches started to subside as her weight went up.  However, she started getting more tired and sleeping more.  Saturday we decided to go for a drive to Watsonville.  There is a great berry farm where you can go and buy freshly made pies and freshly pressed apple juice.  You can also pick your own strawberries.   It was a beautiful drive, Sierra slept all the way there, but I enjoyed it.  The rest of the weekend, Sierra had some great days.  

However, yesterday was a little rough.  She woke up really tired and was dragging all day.  She had no appetite and was very pale, along with some diarrhea.  Today she woke up and looked and felt better.  We ended up with clinic today instead of our usual Wednesday due to scheduling.  In clinic Dr. Bernstein felt like Sierra needed to be admitted.  Her weight was down without any extra diuretics, meaning that she was losing more fluid possibly from the diarrhea.  They wanted to admit her and watch her intake and output more closely.  The doctors feel it might be just a little gut bug that is subsiding.  Where she is so sensitive to being too dry or too wet, they have to keep a really close eye on her fluid balance.  So for now we will sit here in room 3243 (next door to Lindsey's old room) and catch up on school work and episodes of Psych.  With the hopes we will be out by Friday when Jason and the kids come.

Lindsey's favorite OT helped make dinner for the families at the RMH.  Sandra, made some delicious cookies without Lindsey's help.

Sierra at the Gizdich ranch.

Love how their raspberries look. Took a picture to get some inspiration on how to make mine at home look.

The strawberry part of the farm.  Nice big, scrumptious, strawberries.

Our final pick at the end of the day.

Quick Update

Sierra and I just finished in clinic.  She will remain an outpatient, which we are really happy about.  However,  she has been getting some really bad headaches, dizzy spells again and with ANY exertion (i.e. walking fast, running across the street), she gets nauseous and feels like she is going to pass out. Thus, she is not allowed to do anything exerting in any way.  If going up a floor and there is an elevator, she is to take the elevator.  If going across the street, she cannot  run, and definitely no riding bikes (which we haven't done since we got here).  She will remain a status 1B and will continue with the continual heart monitor.  She has put on 5lbs of fluid, but they feel good about that as her kidneys have appreciated the fluid.  She was probably a little dry when we got here. 

Dr. Rosenthal was going to look for a way to make her a 1A on the transplant list.  If that happens, then she will have to be inpatient to be at that status.  So, for now we will enjoy being outpatient with a little more freedom. 

As for Jason and the kids,  Jason is doing a phenominal job of juggling everything.  With the help of his amazing mother and family.  Tonight is the science fair.  We will hopefully get to see some pictures of some creative theories that were tested.  I apologize to whom ever was Sierra's partner.  Sierra and I get to spend some fun times with our favorite little Tristen.  Here are some fun pics of her from yesterday. 

 

 

Lindsey wanted to see a picture of what the new hospital construction looks like.  It is coming right along.

 

 

 

 

Here she is MISS HOLLYWOOD.  So cute!

 

Still Outpatient?

Since my last update, Sierra has been doing fine.  Her labs have returned to a normal level, however, her weight is slowly trending up.  All part of that "balancing" that needs to be done.  She has labs drawn Monday, Wednesday and Friday along with weight checks.  On Wednesday she has clinic where the doctors want to physically see her.  She has acted and felt great.  However, she did have one episode where she became pale and nauseous and just about passed out on me.  We were walking to a friends house and just started a brisk walk when it hit her.  The heart monitor that she has on showed no abnormal heart rhythm.  So, either her heart is getting weaker and couldn't handle the brisk pace, or it was a freak thing that will occasionally keep happening.  I'm betting it is the latter.  Which makes me nervous to talk to the doctors today.  They have checked in daily to see how Sierra is doing, except over the weekend.  I am nervous that once I tell them of her episode, all bets are off of us staying outpatient until transplant.  I do have an argument in place that hopefully they will accept, and allow us to stay outpatient. 

On a lighter note, we were able to get into the Ronald McDonald House yesterday.  Our home away from home.  Not our old room that we had, but a nice room that we are very grateful to be in.  Our friends in Palo Alto, as always, have gone above and beyond to welcome us back.  We are so very blessed both here and back at home where friends are helping with meals and kids.  THANK YOU everyone!!

I'm sure the burning question is, "Will we bring all the family here again?"  The answer is,  we don't know.  Typically how this has worked (at least the last 2 times), is I come with the child that needs to be here.  The other kids finish out their activities and school at home.  Once they are done we then see how the "sick" child is doing.  If they are not too bad we bring everyone.  IF they are really sick and in the CVICU, they need their parents full attention and make it more difficult to have the other kids here.  So, for now we will wait and see how Sierra does and continue on with life.  We want more than anything to be all together.  Gage will have a full work up appointment after June 4th, as his echocardiograms have shown that his heart is getting bigger.  Even though he is on as many meds as they dare give him for now.  Lindsey will have a biopsy July 8th, which will bring her down here.  So there are appointments that we already had in place that will bring the kids here.  We will just have to wait and see, and we will get a "feel" for what the right thing to do is. We always do.

Sierra enjoying some shopping time.  Loving the crazy shoe styles.

Lunch with friends.  Love these ladies.

Sierra loving dessert. 

Trying something new, "fries with eyes."  Not too bad.  A testament that anything deep fried and breaded can be good.  Even anchovies. 

 

Being brave to take her first bite.  She liked them so much, she wanted to back and get some more.  Not sure that would be in her diet.

California Here We Come - Journey #3

To update the happenings of where Jason left off, I will back up to Sierra's appointment April 22nd.  Sierra had her check up and was admitted to the hospital directly from her clinic appointment.  She was hospitalized from the 22nd -25th.  During this admission, she was given IV lasix and her weight, input (how much liquid she drank) and output (how much she peed) were monitored very closely.  Along with daily blood draws that were checking her kidney function and how they handled being hit with the strong diuretics.  We explained (politely) to the doctors that they could admit us, but we had to be home by May 2nd for prom.  Sierra had been looking forward to prom for weeks.  She was going "stag" but was very excited to be dressed up and feel pretty.  They agreed to do what they could do to make sure she was home by then.  They held to their end of the bargain and we were released the morning of the 25th in time to make a flight back home to Oregon.  She was discharged with a heart monitor that she will wear for 30 days to capture any of her dizzy episodes that she may have.

As we were leaving the hospital and hurrying to the airport, we received the devastating news that Sierra's BEST (BFF) friend Lauren, had passed away.  We love this girl deeply and will miss her immensly.  She and Sierra are so much alike.  They are both loving and caring.  Not much for the drama of highschool teenagers, level headed and easy going.  Needless to say, our week at home was very rough for Sierra and all of us.  She started feeling nauseous, weak and tired.  She was very pale with her eyes sunk in.  Take the loss of her friend, hit her with large doses of diuretics, fluid restriction of 2L, and a heart monitor you get the perfect storm. She hardly ate Mon-Wed started feeling better on Thursday and then attended the funeral on Friday to bid Lauren a final farewell.  Saturday the 1st, she was pale again, tired and nauseous, but pulled herself for the prom that night. She looked stunning!!  Had a great time at prom, but on returning vomited throughout the night.  Felt crummy Sunday and Monday.  Her kidney levels were increasing, meaning that they were not crazy about the diuretics she was on.  Monday, May 4,  we talked with the docs here at Stanford and they told us the news that we were not surprised to hear.  It was time for us to come to California where we would stay until transplant. 

Tuesday, May 5, Sierra and I left our home for the 3rd time,  for a heart transplant, not knowing when we will return. we started holding one of her diuretics.  She looked and felt better as we were driving Tuesday and even ate well.  By our appointment Wednesday, she was wondering why she was here and had to clean out her locker at school.  She looked and acted great and had color in her face.  Dr. Bernstein explained to us, that this is how diastolic heart failure works.  There is a lot of small adjusting periods.  Too much diuretics and she feels cruddy, too little diruetics and she retains water and feels cruddy.  The goal is to find the right balance. So, there will be lots of adjusting periods.  She can (for now) stay out of the hospital.  She will have blood draws and weight checks 3 x week along with clinic appointments every Wednesday.  If she starts feeling crummy or her heart monitor picks up ANY arrythmias she will be admitted until transplant.  Hopefully we can keep the right balance going and keep her out of the hospital.

Just and FYI, our kids have had dilated cardiomyopathy (elarging of the heart), this affects the squeeze of the heart.  To help fix this, they have medications that help the heart squeeze harder and when those don't work, then they have devices such as the Berlin that Lindsey was on to help.  Sierra has coronary artery disease of her transplanted heart.  This is caused diastolic heart failure, which affects the relaxation of the heart.  For this there is no extra medicine to help it or devices to place them on.  It is just the adjusting of diuretics.  When her kidneys say ouch after increasing the diuretics, you have to go down on them, narrowing your window of adjustment.  This is a new experience for us as we haven't experienced this type of heart failure yet.  We have a huge learning curve, and are surprised by how serious the doctors take her mildest symptoms.  It makes me nervous of the seriousness of her condition. 

So, again, I leave Jason with watering our 260 acres, keeping up with his accounting job, juggling being the single parent and attending all the actvities the kids have at the last month of school and carrying out his calling in the bishopric.  Sierra and I go to the hospital to school, hang out in the afternoon and sleep in (a little) in the mornings.  We have an AMAZING community and support system at home who are helping immensly and an amazing support system here in Palo Alto.  We feel so blessed and are so fortunate to be surrounded by so many wonderful people.

Sierra getting ready for prom. The final product.

 

 

Darby and Peyton who helped her get ready and did an awesome job on her hair.

 

 

 

Our farewell party Monday night with the cousins.  Lots of red, puffy eyes.

 

 

Sierra and I leaving Oregon.