All is Well

I continue to feel guilty posting,  but enough people have asked what the latest with Sierra is.  She is doing great. She had clinic today and there was really nothing new. It is hard to believe she is only 2 weeks post transplant tomorrow.  Her blood pressure was really high last time.  In fact, she had a seizure at about 3 weeks after her transplant.  This time she hasn't needed all the medsfor her blood pressure that she needed before. Tomorrow she has her 2nd boipsy followed by a13 hour IVIG infusion. So it will be a long day.

Hunter and Gage will go with the RMH to the San Francisco aquarium.  Lindsey will come hang out with Sierra and I in Short Stay.  Megan is at a basketball camp with a friends and will return to Oregon tomorrow. Jason will be glad to have someone there with him and the extra hand for work. We are truly blessed!

 Hunter,  Gage and Lindsey playing on the Palo Alto fire truck.

 Tristen's 3 Rd birthday party.

 Super hero day at the RMH.

For Aiden

With a heavy heart I write this post. As incredible as Sierra is doing,  there are others not as fortunate. Little Aiden was 3 years old when we were in the hospital with Lindsey. He was recovering from a heart surgery to correct a heart defect from birth. He was always smiling and happy and would share his toys with Gage. His family is so loving. He was discharged from the hospital and we continued our long wait with Lindsey.

It is interesting to me,  the relationships you make so quickly with people in these circumstances that are life long. We exchanged Christmas cards with this amazing family. They sent us some beautiful glass hearts they made.

When Sierra and I first arrived here in May,  we ran into Aiden and his dad that were at the hospital for clinic. Aiden had been on the transplant list for just over a year. He was able to wait at home, as they lived close enough to the hospital. He was smiling and had a cute engineer hat on to play with the trains at the hospital. He was adorable.

This last Wednesday,  Sierra,  the kids and I went to get some lunch at the hospital cafeteria.  We saw Aiden ' s parents and grandma there. Aiden had received "the call" and had gone into surgery at 4:30 that morning. I was so happy for them,  but the mom alluded that things were not going smoothly. Not knowing what else to say,  with Sierra standing there looking so good,  we went back to Sierra's room. I prayed that things would be okay for them and Aiden.

Unfortunately,  there were many difficulties. He came out of surgery but was not stable and did not survive. My heart aches for this family. They are so amazing. What is so hard for me is, all of Aidens life they have fought for him and his life. They get the call and finally the wait is over. Then to leave the hospital with the very thing that you were fighting for gone. I pay that this sweet family will find peace in knowing that this sweet boy went straight to Heaven. His sweet smile and love impacted so many people. He was truly an angel. We love you Hansen ' s and will constantly be thinking of you.

Discharged Today

Sierra was released from the hospital today.  She made the record.  The soonest they have ever had anyone out after transplant is 10 days, she did it in 8. She looks and acts great other than a little soreness on her chest (understandably so).

So now what?  One might ask.  We are released to go to the RMH where we will stay for 3 months.  She will have weekly biopsies for a month and then they will go every other week, then monthly.  This will go along with weekly clinic visits and echos.  She had 2 more 13 hour IVIG infusions, one next week and the other 2 weeks following.  They will retest her antibodies and if she is negative she will not have to have the IVIG again.  She is so strong that she will not be needing any physical therapy.  Compared to the schedule Lindsey had, Sierra's is a breeze.  Lindsey had physical therapy and psych that added a lot of extra appointments.  With this schedule, we should be back home in time to start school, which will be wonderful!!

I added a few pictures from the last couple days.  We were able to see Shaambak and Ben who look absolutely amazing.  As well as their awesome parents.  So good to see our dear friends. The hospital showed the new Pixar movie, "Inside Out."  Unfortunately, Sierra did not see any of it, because she was getting educated so she could be discharged.  We will have to hit a matinee.

We are so grateful for how this has turned out. Also,  for another family that has found the ability to give through a  tragic situation.  We feel so truly blessed right now, our hearts are full. Thank you all for your prayers and thoughts.

3 West Bound

Sierra is doing phenomenal. She has her picc line and one IV in with nothing attached. She will be going in for her first biopsy today at 3ish, where they will take out her picc line. IF her numbers and everything look good after her biopsy, I am not sure what will be holding us here in the hospital. She could very well be discharged in the next couple days.

Her last chest tube came out yesterday and was very painful. Her appetite is back and with steroids it will be even better. She is not very excited for the lovely prednisone cheeks,  but they will only last 6 months at the most. I on the other hand,  an excited to have a "teenager" on steroids and all the wonderful mood swings that will come with it. Fun times ahead!

Jason went back to Oregon with his parents yesterday. We will miss him, but know he has a lot of work piling up at home.

We couldn't be happier with how well everything is going.  We are truly blessed and so greatful to the donor family and for their precious gift. We are as greatful to them as we continue to be for the first family.

Dr.  Axelrod just came by to check in and the girls talked him into painting his fingernails. They painted them red and white to go with his "Where's Waldo" shirt. What a great doctor.

Sunday Morning, Fathers Day

Welcome to the greatest day of the year.  This is the day we Dad's have waited for.  Dr Axelrod said this is like Christmas!  Anyway... we are having a great day.  Stacy, Megan and Gage made a nice waffle breakfast with fruit.

Sierra slept good and had no major events. She still has a little pain on her upper right side, but nothing major.  Dr Axelrod and Kaffman rounded just now.  There is still a few fluid pockets around the heart, but nothing they are to concerned about.  Today they are taking out 2 IV ports, (the central line in her neck and arterial line in her arm).  They are also taking out one of the chest tubes, and hopefully taking out the 2nd this afternoon or tomorrow.  ALL good stuff!!  Couldn't ask for a better Fathers Day.

My parents are driving down for a visit with Hunter and Lindsey.  They made it to Reno last night so they should be here any time.  I have great parents!!

Stacy is finished up giving Sierra a well deserved sponge bath.  Sierra is also getting dressed up in nice Sunday attire.  They want her up and moving around most of the day, so she is dressing for the occasion.

showing off her nice necklace from a special family 

 Megan and Sierra on the evening walk.

 Afternoon visit from Jackie.

Mr 'A-real-eous after a fun afternoon at the RMH playroom.

Dr Axelrod showed me a picture of her latest chest x-ray.  Notice the 2 chest tubes that wrap around inside her chest.  Blows me a way the Katz had her chest open enough to place those tubes.  No wonder it hurts to cough.  The tube on our left (her right) is coming out today.  The right one that wraps around her heart may come out this evening or tomorrow.

Saturday, Her first walk

In the last 24 hours, Sierra has continued to move in the right direction.  Right now I am looking at 8 IV's, but the doses have been dropped considerably.  Looking to drop many of the drips today.  Sierra wants them gone!  Also looking to drop 2 painful chest tubs.  Before we can do any of this, she needs to go on a small walk to hopeful loosen up any remaining fluid in/around the heart and lungs.  The x-ray is still showing a little fluid on the right side.  The nurse is currently organizing all the equipment, monitors, IV pumps and poles, and O2 for the big convoy.  

Dr Axelrod is the doctor on today, and he is Sierra's biggest advocate.  He still feels very honored we named our dog after him, he even gave us a doggy bone to give our dog.


I will report back on how the walk went.  

 Our good friend, Art. We have known him for 9 years now, since the first transplant.  He came by to spread a little cheer and show some magic tricks.

 Her dressing change from last night.  this is the course of most of the discomfort.  Kinda has that Berlin look.

This is the breathing treatments she gets twice a day.

Walk went very well.   We made one lap around the CVICU.  We had quite a convoy with a loaded IV pole, oxygen tank, and 2 chest tubes.  We even had Jackie tagging along with a chair in case Sierra needed a rest.   She feels good, so we may go on another walk a bit later.

Jackie is a friend Sierra met at a church activity.  He is the one that bought flowers when she was going in for surgery.  He came by today on his long board ( a long skate board) to say hi.  Stacy and Megan just left to go a bit of shopping, and Gage is off swimming with the Thomas'.  So this gives the 3 of us, Sierra, Jackie, and myself, plenty of time to bond.  One of his first questions he asked me was regarding the guns I own.  I joked around about some the elk I have missed and all the target practice I need.  Sierra thought it was funny. (or embarrassing).    

    

Day 3, Friday Noonish

This is the morning report, this is the long and the short. (name that movie)

Anyway...
She really did have good afternoon. They seemed to have gotten on top of her pain.  I stayed with her until about midnight last night, but didn't feel like sleeping on the ole' 3 chair combo' if you remember.  We are actually in exact same room Lindsey was in when I was sleeping in the ole' 3 chair combo.  Brings back daunting horrible memories.  The chairs were and still are painfully uncomfortable, especially if trying to sleep.  So after Sierra got somewhat comfortable, I took off to get some real sleep.

When we got back here this morning, she was up in a rocking chair but NOT happy.  I guess she threw up last night and her pain was back.  But whether she knows it or not, she is improving!  The nurse had gotten her up and had her take a few steps, her first real steps since Tuesday evening.  Dr Bernstein came by and said she is about 2 days ahead of schedule.  He said once the chest tubes come out she will feel tons better.

They haven't rounded on her yet, (meaning the doctors have officially come by to make a treatment plan for the day). Only question Stacy and I have is when can they start weaning some of the 10+ IV's and 2 chest tubes.  We did ask about her kidney function, and Bernstein said it is showing signs of improvement.  They are actually performing better than Lindsey's did post op.

Gage is at Michelle Hansen's today playing and swimming.  He was excited about that.  He is definitely a fun kid to have around. Every night we walk home to the RMH he is jumping the cracks in the road so he doesn't get 'shocked' or running down the path looking for 'monsters'.  He sure keeps things light around here.

Megan has been helping Abby with a child day camp.  This is a fundraiser they are doing for EFY.  It will be nice to have her here with her sister, especially as Sierra starts to feel better.

Big thank-you going out to Izzy Black and Ruthy Cook.  They were an excellent example of a small act of kindness and service.  The 2 teenagers came by to give Sierra a henna tattoo.  It really wasn't that big of a deal, but it meant a lot to Sierra Bug.  Thanks much.   FYI, a henna tattoo is where they draw cute little flowers on her arm the it sticks around for about a week.

Sierra is starting to text her friends.... So she must be feeling better.

We feel very blessed. Prayers have been answered.    Again thank you for prayers, love, support, and comments.
That's it for now. Till next time,

Rounds just started....
Bottom line, after all the medical jargon and jibber-jabber, they are going to start weaning some of the meds off and replacing with more long term meds.  They are very pleased where she is at. Chest tubes are still draining so they are not coming out yet,...sorry.  The more she can move around the quicker those tubes will come out. Maybe they can come out this evening or tomorrow.

That is everything I know,
Jason      

1:15 pm, Thursday, Day 2

The 2-3 days after transplant is usually rough on patients, and Sierra is no exception.  She was up most (if not all) last night with chest pain, fluid in/around her lungs, itchy, discomfort, nausea, and just flat out miserable.  She is exhausted but wants to get up.  She has retained a lot of fluid and really needs to pee it off.
They have started to remove some of the hardware, but still have a long ways to go.  They have removed one of the arterial lines from her groin, the foley catheter, and a temperature probe, but that is it.  I am still looking at 10+ IV (they added one for pain I think).  It takes a lot of ports to maintain the IVs, this is the hardware you see in her neck and arms.

She also has 2 chest tubes.  These tubes drain fluid from around the heart, This is causing most of the pain and discomfort!  She is on 3+ liters of O2.  Since she has been laying here and her chest hurts so bad, a lot of fluid has built up in and around her lungs.  With that fluid, it is hard to breath and thus not getting the oxygen she needs.

They were able to get her up and into a chair, that helped with the lungs tremendously, and since the catheter is out, she will have to get out of bed to go potty.  All of that movement will help with the lungs, but it hurts so much to move around with the chest tubes.
Bottom line, she is still flat out miserable!!

1:50, just spent the last 15 minutes helping her get up and use the potty.  It takes 2 nurses and a very helpful father.  Basically I stand there, do what you are told, and look busy.

Earlier Amanda came by to visit.  She had a heart and lung transplant back in the Lindsey era.  She hung out in Lindsey's room, went on many walks with us and was a good friend to have.  Now she is 24, going to college, and doing well.  She was here for clinic so she stopped by to say hi and bring Sierra some treats. All very kind of her.

Gage is going to swimming lessons then to the RMH Day Camp.  Stephanie and Wyatt have been good for him while Stacy and I have been with Sierra.  That is it for now,  Thank you for comments, love, and support.  She will get through this, she knows she will get through this, but oh is she miserable.

Till next time
Jason

 Amanda, our good friend from the Lindsey days

 The source of a lot of pain.

 Getting up 

 First real food, not sure she ate any of it.

Alex just came by for a visit. Unfortunately Sierra is getting some real well needed rest. Alex is a good kid who has been though a lot.  We have a lot of respect for him and what he has been through.

       Then Gage at swimming lessons. He was cold and would participate, so the teacher told him to lay in the sun for 15 seconds.

7:50 pm. In recovery

Sierra is steadily improving but in a LOT of pain. At about 2:00 pm they took the ventilator out.  She was happy about that.  Right now she is awake, very shaky and hurting.  The shaking is from the anesthesia meds wearing off.  Her voice is very soft and quiet.  You have to get close to her to understand.  She seems to be recovering much quicker than Lindsey did, but it's only been 1 day.  She wants to sit up, hopefully they can with all the stuff hangin off her.

Speaking of stuff hangin off her, right now she has 10 IVs, 2 chest train tubes, 2 artiliar lines, cathitar, oxygen, and probably something else I don't understand.

She did ask Megan for some bacon!  Given the sodium restriction she was on for the last few weeks, she wants something salty.  Bacon was a good start.

Coughing really hurts her.  She needs to cough to get the junk out, but it does hurt.

We have enjoyed the many comments, love and concern from so many people.  The comments are a huge strength to all of us or they make us smile, or some of them make us laugh! Thanks

Lindsey is having fun (we hope) at Pine Eagle Basketball Camp, Hunter is at Jake and Wendy's and heading to Cub Scout camp. Megan is at Abby's, and Gage is still Gage.

Her first popsicle,

 The vent is coming out

Emily had the quote of the day on Facebook for this picture, and I quote "...only in a moment of sedation would you be able to kiss Sierra so tenderly".    Sierra agreed with that comment.