5:20 am. She is out.

Just wanted to make a few comments. It was a long night, mostly waiting and trying to sleep in some awful waiting room chairs.  Both doctors Katz and Olaf came out to tell us her progress. They both said the surgery went very well.  The new heart did not come from a long way off so it started up without  the 'paddles'.  When the blood was introduced, it remembered what to do and took off.  Had several interviews through out the night with Sandy regarding the status.

Of course Dr Axelrod, is on duty in the CVICU and will be taking care of Sierra.  This is the same Axelrod that helped with Sierra 9 years ago, with Lindsey on the Berlin, helped with Gage on the pacemaker, and who our dog is named after.  We trust this guy.

Things to watch for now is her kidney function, they will recover, but will probably get worse for a spell.  Hope to take the breathing tube out maybe late today.

Still feel sadness for Nick's family.  This is probably of tough day for them.  Not to mention new donor family.  We have many hero's

All very tired and ready for bit of rest.

 Just coming out of surgery this morning.

 Actual pictures of her old heart.

 And the new

 Dr Axelrod in with Sierra

    And of course, our dog, Axelrod.

8:55 pm, Nick's heart

Checking in. Sierra has been in surgery since 5:45 pm. Last thing we heard was that she was on 'hold'.  All of the different lines are in, 4-5 I think.  She has been put to sleep. Now they are waiting on the procurement team to check out, inspect and prepare the donor heart.

It has been pretty exciting around here.  I (Jason) drove home to Oregon with Hunter and Lindsey yesterday, the usual 13 hour drive.  Went to bed around 10:30 pm, then less than 2 hours later at 12:04, Stacy called me with 'The Call'.  Didn't know what to do.  Get up? Wake the kids up? Leave for Calif right now?  Make a bunch of calls?  Go back to bed?  Stacy and I were pretty sure it wouldn't happen right then, so I went back to sleep.  By 8:00 am we had figured out what to do with the kids, rearrange work, line up a  flight to Calif, and head out.  Between Brad Allen's plane and Lalo Gaura as the pilot, I was back in Calf by 3:00 pm.

The reason I haven't blogged much is how incredibly busy I have been.  Between the office, ranch, baseball, kids activities, and church, I just haven't had time.  Now I am here, with time and ready to go.

9:20 pm. Just heard from the doctors, and they said it is a go.  They have physically seen the new heart and have given the green light to open Sierra up and start dissecting.  Can't believe I just used the word dissecting,  Anyway, that is how Dr Katz put it.  Katz is the same doctor that did Lindsey's transplant.

Lindsey is home going to he Pine Eagle Basketball Camp.  Molly said she did good today and did not get home sick, but it is only the first day.  Hunter helped his grandpa all day with the cows and chores.

Couple of thought regarding Sierra's original donor, Nicholas and his family.  We were talking today about them.  Gena, James and the rest of Nick's family are the true hero's.  They were the ones that decided to allow organ donation 9 years ago under the most uncomprehendable situation.  I have so much respect for them.  My heart goes out to them at this hour.  Right about now, 9:30 pm, Nick's heart is coming to stop for the final time.....  Something that they have held onto for 9 years is now coming to an end....  God bless Gena,  James, Sherry and the rest of Nick's family.

Till next time.
Jason

    

"The Call"

At 11:53 last night,  we received the call that they have accepted a heart for Sierra. Sierra was admitted to 3 West at 2:30 this morning where she awaits transplant. We have not heard a time or if it is a for sure go yet. So,  trying not too get too excited.

Jason pulled back into Oregon last night after being here for the weekend. He is waiting for the confirmation and then he will come. Stay posted for further updates.

Hanging Out at the RMH

Sierra has been out of the hospital for 5 days.  It has been wonderful!! Even though we have to stay at the Ronald McDonald House, it is nice to have some freedom to go different places.  The doctors placed Sierra on an 1800 mg sodium restriction and 1800 mL fluid restriction.  The fluid is not a problem, I usually have to push her to drink that much.  The sodium is a different story.  I have never read so many food labels in all my life.  Foods that I thought were delicious, after looking at the food label, I realized why. I didn't think it would be that big of a deal, because we don't eat that much salt anyway.  However, for a teenager, being told she can't have pizza, tacos, cheese, chips and salsa or her favorite microwave popcorn, she was not happy.  She has stayed under the 1800mg and found some great low to no sodium snacks for in between meals, I am really proud of her. 

The milranone seems to be doing it's job.  Her kidney function is staying in the normal range.  Her weight they want around 42 kg, but it is being a little bit bull headed and staying above 43 kg. We give her an extra dose of diuretics when her weight is above 43 kg.  We have had to give her the extra dose the last 3 days.  We have clinic tomorrow.  I am always a little nervous for clinic, as we never know what to expect.  I wish more fluid would come off with this milranone, it makes me VERY cautiously optimistic.  This is a different heart failure than we have gone through before. In the past the milranone only worked for a short period of time, and Sierra and Lindsey were never able to be outpatient on the milranone, they were too sick.  My caution is that, as we have seen with all meds, they work for a little while and then they are not effective.  So, we will cherish the days that we have with her out of the hospital, because I know they will not last.  

Gage started swimming lessons today at the local pool.  It is good to get him involved in something we would "normally" do at home.  He loved his lessons and had a great time.  Looking forward to going back tomorrow.  I am really missing my other kids and hope we can all be together soon.  We are excited to have Megan coming on Saturday. She has definitely earned a vacation from all she has done at home.

Friday Gage, The Thomas's and I went for a bike ride to the children's library.  The kids did great! 

On Saturday we went to a community bazaar in Portola Valley.  It was very fun and warm. 

Sierra, Alex, Tristen and Gage sitting on the grass at the bazaar. 

Gage finally got a hair cut.  Thanks to this amazing volunteer who comes to the RMH and gives patients and families hair cuts. 

Sierra went to the movies last night with a friend, so Gage and I went to our own movie.  Lots of fun. 

Gage ready for swimming lessons. 

 

Discharge Tomorrow

Sierra did well in biopsy.  The pressures in her heart were acutally normal and her coronary arteries are unchanged.  So you might ask why does she need a transplant then?  This is her heart on Milranone.  The milranone has allowed us to pull the fluid off her heart to bring her pressures down.  Had they done the biopsy a week ago, her pressures would have been much higher. They are saying that we can go to RMH tomorrow on the milranone.  We are excited for that.  I didn't think that there was ever a day that I would not worry about Sierra's biopsy results.  But, for once, I am actually not even worried.  There is so much other stuff going on that rejection is not the issue. 

 Last day of school for everyone tomorrow.  Gage and Sierra here and Megan, Lindsey and Hunter at home. We are all excited to be done and have summer.  Whatever adventures this summer may hold for us.

Pictures of Sierra learning how to work her pump that she will go to RMH on. Her first hands on experience with nursing.  This will look good on a resume.

Possible Discharge - June 2, 2015

Sierra is feeling better.  She is eating full meals, sleeping well and tolerating longer walks without getting winded.  We have had a deja vu week hanging out in the hospital with Sierra.  A very similar schedule that we had with Lindsey.  Get up, have breakfast, go to the Sobrato room, play cards, back to the room for lunch, go for a walk around the 3rd floor, back to the Sobrato room for coloring or cards, returning to the room for dinner.  After dinner, one more good walk before going to bed. School helps break the schedule up a little bit, I am not sure what we are going to do when it ends this Thursday.  Today in rounds, they talked about a possible discharge on Friday, but I am shooting for Thursday.  Tomorrow she will have a biopsy done, check her coronary arteries and pressures and fix her picc line.  Her picc line is not in as far as they would like it to be.  The vascular access team could not get it to go in further due to narrowing of her vein.  The cath team have a few more tricks they can do in the cath lab to open the vein and thread the picc line in where it needs to be.  This is in preparation for discharge.  

Sunday, the Palo Alto firemen came to the RMH and fixed dinner for everyone.  They do this once a month and it is always amazing food.  Gage was so thrilled to see all their trucks and get to go inside them.  It has been great having him here.  He does what he was best at with Lindsey.  He runs ahead and hides from us and we see if we can find him.  It is pretty funny, because all the floors make a circle and are glass most of the way around.  You can see Gage as he is running to the next spot to hide.  Don't worry, we act really surprised when we find him.  

Sierra has made a friend who has been in and out of the hospital for the past 3 years.  Her name is Morgan and she was here when Lindsey was in the hospital.  She has an autoimmune disorder, so they hospitalize her every time she has a "flare up."  This last admission has been 3 months, but she is going home tomorrow. We all took a trip to the cafeteria yesterday.  It was quite comical, I wished I would have gotten a picture.  Morgan had her big pole with 3 pumps on it and her wheel chair.  Sierra had her IV pole  and Gage was bringing up the rear.  Between the 2 IV poles the cafeteria space shrunk pretty quickly.  Morgan hung out with us in the Sobrato room and we taught her how to play Nertz.  We will miss hanging out with her when she goes home.

Gage by the ambulance.  Looking around. 

This is the "great big" fire truck, Gage and his buddy Wyatt.