Day 111, Feb 28 Thoughts from the air

Flying back to Calif

Jason here.  Things are continuing to go well, never perfect but very well.  It is always a hard week for all of us when I go home for work.  Since tax season started, I have been spending a week in Oregon, then a week in Calif.  I’m very grateful to be heading back to spend some time with the wife and kids.  Gage is still stable and strong and ready for the ‘big day’.   As usual, he had his weekly clinic visit with the doctors.   Couple of small items to note. First, his aortic valve is leaking.  Not sure exactly what that means, but the team doesn’t seem too concerned (at least not in front of us). Then have again increased his Lasix to twice a day to pull some of the fluid off and see if that helps.  Second, he has had some small runs of V tach, or irregular heartbeats.  Again they are not too concerned but continue to watch and monitor him closely. 

His spirits seem to be up and is pretty active (sometimes too active, ie fighting with his brother).  They reminded us he is still full of metal and needs to be careful, especially when he is feeling good.  Stacy is doing a great job of monitoring, and tending to his daily needs of dressing changes, feeding tube, fluid intake, bathing, exercise, schooling and medicine.  It’s no secret, I really have a great wife and mother of my children.

All the other kids are doing their thang. Sierra is hangin’ out with some new friends and doing LOTS of home work.  Megan has practiced with the varsity basketball team all week and got the play the last 56 seconds of a varsity game.  They have their tournament this week so it will be fun to support her in that.  We all doubt she will play much, but this will be a great experience for her to run with the big dogs.

Lindsey is starting to have better experience at school.  Junior high can be challenging, and this is no different for our little princess.  Hunter is Hunter, what can I say.  We have him on a little league team, and that seems to be good for him. As I have said before, he needs or rather we ALL need something constructive for him to do.  If not, be digs a hole for himself pretty quick. 

I am pretty focused on these trips to Oregon.  I am home for one reason.  Get as much good quality work done as possible so I can get back to my family.  I have some great clients, and I work hard to make sure they are taken care of, or at least their finances / taxes.  Our vicious man-eating guard dog, Axelrod, is there protecting the home front and waiting for me to return and throw a stick for him.  When I pull up to the house and open the car door, he just lays his head on my leg and wants me to pet him…. Then throw him a stick!    In California, I am able to work in an office, just not the long intense hours.  More like ‘normal’ non-tax season hours.  Thus I go back and forth to balance it all out.  Honestly, I hate being home by myself, but this is the best way to make it all work.  The office and clients are good to work with me.      

With these trips back and forth, people from our church take turns giving me rides to the airport.  I have really enjoyed the rides and have had great visits each time.  It is very relaxing as I prepare to return to the ‘other’ life whether it is to Oregon or Calif. 

Today was quite an emotional day for me.  At our church in Oregon, I have been serving as a counselor to our Bishop, (the leader of our local congregation, Tom Isaacson).  It is usually a 4-5 year calling.  I was put in back in May of 2015 about a month before Sierra had her 2^nd transplant.  With her 3 month recovery and Gage getting sick in November, I have not been able to assist our good bishop and our congregation, as I have wanted and needed to.   As Gage’s saga has progressed, and with the kids involved in the Calif schools, it came to the point that I need to be there more.  Today was the day I was released as a counselor, with Kevin Bradford taking my position.  I have really enjoyed this calling but we all knew it was the right thing to do, the ONLY thing to do.  It was just tough to let it go.   Sitting up on the stand, I looked over at my cousin Hilary as I was being released and all my emotions caught up with me.  It’s not the fact of just being released; it was why I am being released.  We are now living in Calif supporting our youngest child as he waits for a lifesaving heart transplant.  No matter how bad I want to be in Oregon with my little family, this is what needs to happen.  Axelrod will just have to wait for a week or so for us to throw him a stick.  Until then he (and my good parents) will continue to guard the home.  Please understand, I am not doom and gloom, it was just hard to say good bye for now to our good and very supportive church group in Oregon. 

On a brighter note, I need to make a formal announcement.  Back in November I asked Gage (and the other kids) if I should grow out my chin hair until transplant.  Overwhelming response was NO, not that nasty chin hair!  But they did want me to grow out my head hair.  So if you notice my hair getting a bit wavy with an extra glob of hair jell, now you know.  My goal is to have hair like Prince Charming off of Shrek.  So, since November 10, 2015 I have not nor will not cut my hair until Gage’s transplant.  I’m pretty sure my wife likes to run her fingers though my wavy hair, she just hasn’t had a chance to yet.   Hopefully I won’t need to do the man-bun thing, but we will have to see.

Getting close to landing, till next time… Jason

Axelrod ready for action...and wants me o throw a stick

Our good friend, the Stockwells from Alaska

I guess Hunter did Stacy's hair for church.  He was so proud of it, he wanted a picture.

    

DAy 103, Feb 22

This last week with Jason here went way too fast.  I feel like we just get used to having him here and around us again and it is time for him to go back home.  We are so grateful for the job that he has that allows him to be here as often as he is.  It makes us treasure those moments more.  This has been quite a week for us.

Sierra had clinic on Tuesday.  This was just a check in clinic.   She has clinic monthly with biopsies every 3 months until her first year anniversary.  Then, if all continues to go well, she will go to biopsies every 6 months.  She is doing very well.  The doctors cut her lasix down.  She hasn't been off lasix for years.  Starting tomorrow, she is officially off of lasix.  While we were in clinic, we were ecstatic and pleasantly surprised to receive a letter from her new heart's donor family.  This letter took a while to get to us.  It was written before November and we just received it this week.  We were very excited to receive it and they would like to meet Sierra.  She wrote them back and is looking forward to meeting them as well.  Sierra has the precious heart of a 10 year old girl named Jasmine.  Stay tuned for more on that as it develops.

Gage had clinic as well.  There wasn't much to change on him.  They are adding lasix back to his medication regimen.  He was starting to retain some fluid.  He was taken off the lasix when he was sick, because they didn't want to dry him out so much.  Now he is better and he is holding on to his fluid.  He is acting like himself, very energetic and quite the clown.  He would love to play baseball, and so would his father like him to play baseball.  I am just a little too nervous about a flying ball coming at his HeartWare or his stomach.  The debate still continues.

Megan finished up her basketball season for JV. She was invited to finish the season with the varsity team.  This is a big honor and she was very stoked about that.  I don't know if she will play at all, but she will practice with them.

Hunter is loving baseball and doing very well in school.  When I ask who he plays with at recess or lunch he says, "Well, it depends on what I am in the mood to play."  Then proceeds to give me 2-3 different activities and the names of the kids that play in those activities.  I think he is fitting in fine.

Lindsey is hanging in there.  Still struggling to "fit it."  My heart ached for her today.  She has some girls that she really wants to be good friends with in her class at school.  They keep snubbing her and are a little snobby towards her.  I met with her teachers and counselor for an IEP meeting this week.  Even the teachers were upset with these girls in their class, because they could see these girls being snobs to Lindsey.  This is the hard part, when there is nothing we as adults (parents, teachers, etc) can do for her.  She has to figure it out on her own.  Needless to say, she was REALLY missing her friends from Oregon today.  I think this is why she likes to be around adults so much, they don't tend to be mean to kids.   There must be a safety for her that she finds from them.  Unfortunately, lessons have to be learned, no matter how hard this is for us.  I have no doubt she will find a good friend, it might just take a little longer than she (all of us) were hoping.

Jason is very busy as in any tax season.  I am doing well and keep seeing the blessings placed before us every day!

Sierra and I looking at the letter from her donor family while in clinic.

Gage doing physical therapy.

Some very sweet girls from John Day sent Gage a super hero package.  He loved the cape and mask they made for him.  Thank you so much girls.

Hunter at his Blue and Gold Banquet here in Palo Alto.  A little bit bigger troop than Oregon.

Every time I change Gage's dressing I take a picture to email to the doctors so they can see if it is infected or not.  So far so good, it looks Very Good!

Saturday Sierra and I went to a conference on cardiomyopathy.  It was put on here at Stanford for families with different types of cardiomyopathy.  This slide was from one of the speakers.  I thought it interesting that more people die of a Sudden Cardiac Arrest (SCA) than fire or gun shot situations. It was a good conference and we were interviewed and featured in the San Jose Mercury Newspaper.

The highlight of our week was seeing our wonderful friends "The Stockwells."  We met them way back when this journey all started in 2006 when we were here with Lindsey.  Shawn was here for biopsy and check ups.  More pictures to come.  George and Jason before Jason had to head back home.

February 15.

Jason here.  It has been a while since I checked in.
Gage has shown real improvement lately.  He is gaining good weight, up to about 46 lbs which is 7 lbs heavier than when he was released from the hospital back in December. He is actually asking for, eating, and not throwing up breakfast.  That is a big deal, he has done any one of those three things but never at the same time.  He is back in school and loves to fight with his older siblings.  As Stacy said in earlier posts, he is back to status 1A meaning he is on the high priority list and can accept an offer if/when one becomes available.

Stacy works hard at monitoring and tending to Gage's needs.  He gets showers and dressing changes 3 times a week. Sometimes the dressing changes can be quite an ordeal.  It can be very painful to Gage, so sometimes he does NOT hold still.  Stacy has to keep a sterile environment so it gets a little exciting when Gage thrashes around.  I think those two have finally come to an agreement on how to do the dressing changes.

Stacy also monitors Gage's fluid very closely.  He gets 500 ml per night on the feeding tube, and another 1000-1200 by mouth every day.  Some days we really have to push Aurelius to get the fluids it him.  If we push to much, it can backfire. Literately, backfire...it all comes back up.  So there is a balance there.  Gage also has blood draws and clinic weekly or sooner if anything seems out of place.

Having said all this the rest of the kids are involved in everything kids do.  Sierra is working through
school, struggling in some classes, but getting through it.  Megan is loving basketball.  That has been really good for her and us as family to go watch.

Lindsey is in the same boat as Sierra, working through school, but also very challenged in some classes.  Yesterday was her 3 year anniversary for her heart transplant.  She has done really well with her heart and has checkups every 3 months.  It has been neat to reflect to the exciting times 3 years ago as she was going through her life changing experience.

Hunter is playing little league.  He REALLY needs something to do, if he doesn't have something constructive to do, he finds something destructive to do.

Stacy has very little time for herself.  Some days can be very stressful for her, especially if Gage is having an off day (which do and still will happen).  I feel bad and wish there was more I could do to help.

I am very busy in tax season.  I am working out of an office here in Palo Alto, but also going home to Oregon to work.  Right now I am spending a week in Calif, then a week in Oregon.  That seems to be working for appointments and workload.  It is a strange feeling when I go back home to Oregon to work.  It is hard to relax at home.  I am there for one reason, and that is to work as hard as can, so I can get back to my family in Oregon.  The house is nice, but very big and quite.  Axelrod (our dog) is being fed and cared for by my parents, but always loves it when I come home and throw a stick for him.  Someday it will be our home again, but not yet.
Also, someday, Stacy and I will leave all this and go on a vacation far far away....but not yet.

Today was my first day back from Oregon.  The kids did not have school, so I also took the day off.  I know how busy I am, but ya know, I needed a little family time.  We rode bikes and walked up around the Dish.  I also played a lot of baseball with Hunter to help him get ready for the Palo Alto Little League. It was a very nice warm day with all the family.

Last of all I wanted to give a very sincere thank you to the people from back home and from all over the country who have sent us cards, comments, support, prayers and care packages.  We have read each comment and card, and are very grateful for the good people out there.  Many of these people we will never have the chance to meet, but many of the letters and comments have really lifted us up. Thank you.

Tuesday we have clinic, phyiscal therapy, and blood draws for Sierra and Gage.  Megan has a game this evening, kids have school and homework, and I have work (of course).  It's ALL good. We are blessed, busy and wouldn't want it any other way.  Till next time.

Below are a bunch of pictures from the last few weeks I have had on my phone.

The Hawaiian family.  Awesome fun loving family, along with our good friend Alex and Ronda.

Down by the creek behind the RMH.

This would have driven my Mother NUTS to see this!

Stacy took the kids to Santa Cruz last Friday.  They had a good time at the beach.

The new RMH (next door) is getting close. They say families could be moving in first of May.  Stacy and the kids toured the place. I haven't seen it yet.

Stacy and the kids went to Sophia's place.  Her foster parents have a nice place with the Atari arcade and swimming pool.  Hunter found out the water was NOT as warm as previously thought.  But the hot tub was nice.

Pictures from our bike ride on Monday.

Walking up by the dish.

  

Moving Up to 1A Status

Gage had clinic yesterday.  The doctors cleared him to go to school!! His influenza swab came back negative.  His INR is high (blood is too thin), so they reviewed with me the signs and symptoms of stroke (that always gives you a warm fuzzy).  They also told us that Gage is doing so well that they have decided to move him up to a 1A status.  They were going to wait until the 20th of March, but have decided that now will be fine.  This is great news! He has been at a status 7, meaning he could not receive an offer if one came, but he is accruing time.  So we are now at day 93 on the transplant list and our true wait begins.  Gage was also seen by a large group of doctors from Michigan who are looking into starting a HeartWare pediatric program there.  They were very interested in "Bluewood" and liked how Gage packed it around like it is part of him (which it is). Gage was very excited to return to school. He had a great first day back.  However, the kids don't have school today through Monday for the Presidents day weekend.  So, he was able to go back for part of 1 day, but will officially return on Tuesday.

Megan had a choir concert Tuesday and Wednesday this week.  It was quite a concert.  There were a lot of solos.  It impressed me how these kids just put it all out there.  They sang pop songs from all genres.  There was a large group of kids, so the concert ended up being 2 1/2 hours long. A little longer than we were expecting, but all the numbers were great.  Megan didn't have a solo, but sang 2 numbers with the beginning choir. Needless to say, this made for 2 really late nights and the kids were dragging Wednesday.  The only way I got them out of bed Wednesday morning for school, was the promise that there was no school today.

On a heavier note, yesterday was a rough day of being reminded of our blessings.  There were 5 kids on VAD's when Gage was on the 3rd floor.  One received a transplant, one was on a different device other than the Heart Ware, and that left 3 of us at the RMH.  2 were teenagers around the age of 14.  One of the patients had returned home because he was doing so well and lived close enough by, they could be there to wait.  This patient passed away.  I don't know the logistics or the cause, but he was stable and doing very well.  It just makes me nervous, we certainly can't take the fact that Gage is doing well for granted.  He could have a stroke or any other complication out of the blue and not make it to transplant.  We also heard of another family who (not at Stanford) got the call for their little girl to get her heart.  The little girl came out of surgery, but ended up not surviving the transplant.  We have been through 3 transplants and the outcomes have been so well that we start to think it is routine.  What a great reminder that life is fragile, these heart kids are fragile, each day with them is a day to embrace how special they are.  I feel so sad and my heart aches for these 2 families.  I myself cannot wrap my head around losing any of my children.  But the reality of it is, I very well could.

This is half of the kids at Megan's choir concert.  They did a great job.

Still No School

Gage had a great week last week.  We stopped running the Pedialyte and he is able to take in what he supposed to by mouth.  He is in great spirits and definitely ready to go back to school.  They didn't want to swab him until Wednesday, but I begged them to do it today to see if he could at least get one day of school in this week.  This is the 3rd week he has been out of school since getting sick.  Way too much time. The kids don't have school Thursday-Monday for Presidents Day. So, already his school week would be cut short.  We won't heart the results back of that until tomorrow.  As far as the results of his CT scan, the doctors said it looks like it is resolving.  In just a couple more days, he will be off his anti seizure medicine.  He was really excited about that.  Gage will have clinic on Wednesday, but so far appears he is getting back to his "stable" self.

It appears, it is Sierra's turn for the cough and congestion crud.  She started feeling a little "tickle" in her throat on Friday and it has turned into a wonderful cold.  She is pretty tough and is hanging in there.  Jason returned home to Oregon to get a bunch of work done on.  With everyone flying "in" for the Superbowl, it made the "out" tickets pretty cheap.  He will return on Sunday to celebrate Lindsey's 3 year anniversary of her transplant.  Megan is doing well in basketball, their team lost one of 3 games this week.  She is talking about playing softball when she is done with basketball season. We just signed Hunter up for Little League.  He is one that acts his best when he has something to do.  He is very excited to play.  His first practice will be the 15th of February.  The weather is a little different here than Oregon.  It has been absolutely beautiful and sunny with highs in the low 70's.  I think I can get used to baseball season here.

We continue to get cards and donations from people all over the United States.  We are so humbled and in awe at the generosity of so many people.  It is just crazy and comforting to realize that there are still wonderful people everywhere! Thank you to so many who have given us donations or cards and letters of encouragement.  We are so blessed!

Gage is enjoying the warm weather.  He decided his dad might have to bring him shorts back from Oregon. 

Lindsey and Hunter enjoying the Super Bowl their way.  Having fun at our friends Jed and Gayle Blacks.  Some really neat friends we have here, 

Another Day

Yesterday, Gage had a routine CT scan.  The doctors wanted to look and see where his brain bleed was at, to see if they could start weaning him off of his anti seizure medication.  One less pill he would have to take.  We haven't heard the results yet, but he hasn't shown any symptoms of any kind since his seizure way back in November.  

Today, Gage had physical therapy and clinic.  We were hoping they would say he was good to go back to school, but no such luck.  He hasn't had a fever in almost a week.  He still has some diarrhea, and vomits whenever we are really trying to push his fluids.  Before he got sick, he was supposed to drink 900 mL a day with 500 mL of Peptamin Junior at night through his NG tube.  When he was sick, he got dehydrated really quickly.  So, they upped his fluid level to 2 L a day from 1400 mL.  For now, during the day, he has Pedialyte going through his NG tube. He also has to drink another 900 mL on top of that with the 500 mL of Peptamin Junior at night.  It is impossible for him to get this much in and he ends up vomiting.  Luckily today in clinic, they agreed with me and decided to give him all that he could handle and not push it.  His appetite is SLOWLY coming back and his cough and runny nose are almost gone.  They want to wait until next Wednesday (the 10th) to swab his nose and if he is negative for influenza, then he can go back to school.  So, we have a week we get to do school work from the RMH.

It is great to all be back together.  Jason is back and jumped right into the swing of things.  Don't know what we would do without him.  It is busy around this area right now, as the Denver Broncos are practicing for the Super Bowl, at the Stanford Stadium (just down the street from us).  There are emails going out from the high school stating that if you come to the school to drop off your child, you will be ID'd to make sure you are okay to be there (not a spectator).  An experience I never thought I would have.