Day 200, Color Run,

Friday, May 27, 2016

Back at you from good ole’ Alaska Air. Heading to Calif to spend the weekend and my birthday with the family.  Lookin at the big four-six.  Time marches on.  My mother wisely told me to go to Calif knowing I would be a grump if I didn’t head down. 

Last week of school for the kids.  I know they are excited to be done with the home work.  Bit of an exciting week coming up.  I will be staying in Calif with Gage and some of the kids while Stacy heads to Oregon with her mother and sisters.  My hope is they will go through all the piles of ‘stuff’ I have brought home over the last 6½ months.  And there is a lot of ‘stuff’ to go through.  With her gone I will have the opportunity to learn how to do dressing changes in a sterile environment, manage the feeding tube, keep the meds going, record the vitals, don’t miss any appointments, and pray nothing goes wrong!!  Stacy will leave June 2^nd and return  June 6^th (unless the ‘call’ comes).  Statistically speaking, we have to be getting close to the call, right?

The Man-of-Steel is doing well.  They increased the rpm’s on the HeartWare from 2100 to 2200.  They want to see if the increased flow will help with the kidney function. The down side is the risk of suction events.  This is all the normal monitoring of Gage and the VAD devise he is on.

Sierra’s lupus blood tests all came back negative.  So that all good.  She still has signs of it, but the blood tests did not prove she has it.  This all means just watch and see.  It is good to be this close to the specialist.

Still no word on moving into the new RMH.  We might (heavy on the might) be moving into a regular house for a couple of months.  Some friends in the area will be gone until August so we might move in for a spell.  Either way, it’s all good.

That’s it for now. One of these days I will report the ‘call’ but not yet.

The hair is getting a bit hard to manage.  Going through lots of hair products!     

Saturday, May 28, 2016

Good to be here. Thanks Dad for covering my work while I am gone.  Today was the annual 5k Color Run in San Jose.  Thousands of people show up for this thing as we run a 5k.   During the run they have loud music playing and all the colored chalk you can handle.  They throw it on you as you run, then give you packets of the colored powder to throw on your friends.  It’s tons of fun.  Took Gage on it for a bit.  Now, Saturday afternoon, the kids are studying.

Day 200 is in the books,

Till next time

Jason

Day 194, Hospital prom

May 21, 2016

Heading back to Oregon so time to update the blog.  This time I am heading home on a Saturday afternoon rather than Sunday.  I need to get home to help on the ranch and to go to church tomorrow.   This last week was all business as usual, but there was a lot of business to report on.

11) Sierra’s biopsy.  She had biopsy this last week.  A little different result than we are used to.  Her heart pressures are down slightly and her coronary arteries look good.  Those are good reports we don’t take lightly.  The next day we got the biopsy results.  ‘Inconclusive!’ What is that suppose to mean?  I guess there was a new fellow (at the direction of Dr Perry) doing the procedure and 3 of the 5 heart samples were not good or not done right, or somehow contaminated.  The 2 samples that were good showed zero rejection.  That is good!!   But they cannot give her a ‘zero’ because the other 3 samples were bad.  Soooo, they are going to leave her rejection meds the same, drop a few other meds,  and biopsy again in 2 months.  That means Lindsey and Sierra will both have biopsies in July.

  2) Gage’s HeatWare.  Yes, we have something to report on good ole’ Blackwood.  Over the last week the port that connects the controller in his backpack to the his heart pump in his chest has been loosening. We told the nurse practitioner and of course they wanted to get it changed out. Stacy took him in, they hooked him up the monitor, prepared the new controller, gave Gage an Ipad to play with, and started changing the connections.  After about 30 seconds Gage got light headed and acting really funny. Come to find out, the heart pump does not start working if the monitor is plugged in first.  Once they unplugged the monitor, the pump started working and Gage perked up.  Goes to show they are still learning about the devise and also how much Gage depends on the HeartWare.  Gage really is doing well, but not with out Blackwood strapped to his back keeping him going.

  3) Golden State Warriors.  Occasionally, the RMH receives donated tickets to professional sporting events.  That is how we have been able to go to SF Giants, and 49er games.  Still want to make it to a Raider’s game.  Anyway, 4 tickets came up for GS Warrior’s playoff game against the Oklahoma City Thunder.  We jumped on the opportunity and had a great time.

  4) Hospital Prom.   Last night was the annual hospital prom put on by the LPCH school staff.  It is a huge production to put on and involves over 150 volunteers.  For the last 2 weeks Stacy has been making decoration while sitting with Gage at school.  The activity is more of a carnival rather than a prom, but all the kids gets dressed up and have a great time.  I was very impressed with the school staff working so hard to put it on.  No where else can you find that kind of atmosphere; you have kids of all ages and all types of medical conditions, with parents, nurses, doctors, college age kids, volunteers, and music DJ’s ALL having a good time.    There were games, activities, face painting, loud music, dancing, good food, and awesome decoration.  The theme was an African safari.  I wanted Stacy and I to go dressed in full costume as Tarzan and Jane!  That would have been awesome. But it didn’t workout so maybe next time.  

Alex asked Sierra to the prom and were both excited for it.  However, Alex had a major complication from a biopsy and was hospitalized.  He had been on a ventilator for several days but was able to get well enough for the prom.  Needless to say, Sierra picked up Alex from the CVICU in a wheel chair and they had a great time.  Stacy and I are still ‘Team Alex’.

5)  Move to the new RMH.  Still planning on moving to the new RMH but it keeps getting delayed.  They are still working thing out and will let us know when it is ready.  Our room will be smaller than our current room so we are in no big rush.

6)  Hunter’s Little League.  Hunter’s season is over.  It was a great experience for him.  For the post season, it is a double elimination tournament that takes a few weeks to run.  They lost the first game, won the second, and had a great game 3^rd game.  In that game it was the bottom of the 6th, score was 8-6 us, and the other team was batting.  Bases were loaded, two outs, and Hunter was in right field.  Up to bat comes their hard hitting left handed batter!  For those of you who don’t know baseball, left handed hitters generally hit to the right field area (Hunter’s spot).  Stacy and I start praying, yes we pray for Gage, but this time it was for Hunter!  Please don’t hit it to him, please.  Whap! Hard hit just off the 2^nd baseman’s glove between right and center fields.  Hunter couldn’t get the ball fast enough and they scored 3 runs.  Hunter felt so bad and the tears started to fall.  Not much we could say to comfort him as we made the slow long walk back to the RMH.  Even Lindsey tried to comfort her brother, but to no avail.

7) Nathan and Leslie Kerns.  Had a fun visit from our good friends Nathan and Leslie Kerns. They are driving from Seattle to San Diago.  Long drive with 4 kids.  Anyway, it was nice of them to stop by for a visit.  Megan had a basketball game so we were all able to go and have a good time.  To bad Megan’s team got beat.

8) Hunter had his end of year recorder concert at Nixon.  Of course he did a great job, it is impossible to have ‘bad’ recorder concert, right?  They did have a 5^th grade orchestra.  Now they were amazing.  I guarantee it those kids come from ‘Tiger’ parents. (You would understand if you read the book about the ‘Tiger Mom’).

9)  Megan and Sierra had their final year-end band and choir concert in the new PALY auditorium.  $29 Million PALY auditorium. Coming from Powder Valley High School, it is hard for me to understand those kind of numbers.  Of course, Megan and Sierra did great.  (What else would a parent say)

10)  Summer is fast approaching.  School gets out June 2, so Stacy and I will be changing everything up to make it all work.  We will have kids spread from Calif to Oregon.  We will figure it out, but not yet. And just when we do ‘figure it out’ the call will come.  

So here is to Day 194.   I have a busy week in Oregon, hope to be back for Memorial Day.  Till next time.  Thanks Dave and Beth for the ride home.

Jason

  

 Sierra and Alex heading to hospital prom.

 

   

 Kiddo's all dress and ready to go.

 The kids from the RMH all heading to the hospital prom

Hunter loved the virtual goggles at the prom

 Excited to be at the Golden State Warriors game.

 Sierra and some of her new friends 

Hunter at his concert

Stacy loving her son after the tough loss.

Catching up

May 8, 2016 (Going back to catch up)

Now that trip was way too short.  I flew to Calif on Friday to be with the family for Mother’s Day and Stacy’s birthday.  Now, Mother’s Day, I am flying back to Oregon to get more work done.  

Honestly, not a lot has changed since last week.  Gage is still waiting, 180 days now.  It will be 6 months on the 10th.  He is very stable and waiting for the perfect donor heart.  Kids are all still involved in school, cub scouts, little league, dance, basketball, band, church, and softball.  School gets out June 2, so Stacy and I are looking at all the options and what would be best for the summer months.  Our routine will be shot out of the water so we will have to come up with a new routine.

Had an enjoyable Mother’s Day / birthday for Stacy.  Kids and I worked hard this morning to make breakfast crepes, write cards, and make the day special for their mom and my wife.  She had some good quality time just for herself so we must have done something right.  Unfortunately, my flight left at 4:00 pm so I couldn’t spend the rest of the day with Stacy on her birthday / Mother’s day.   

This coming Saturday we will be moving into the new RMH next door.  It is a very nice facility, but the single room is quite a bit smaller with limited storage space.  Stacy and I and the kids will be finding a way to live in one very nice motel style room.  The community kitchen, dining area, and play rooms are very nice and spacious, so we are excited to make the change and make it work.

Megan spoke in church today.  Did a great job.  Spoke about qualities of mothers she admires with good fun examples.  She spoke of service, forgiveness, and hard work.  She told the story of my dear mother and the zip lock bags. Very funny!  Then talked about our garden in Oregon and how Stacy ‘forgave’ them of their whining as they weeded and picked the beans.  Also talked about this morning as Dad burnt the crepes while writing sweet nothings in Stacy’s card.

At church I helped teach the 7 year olds.  The men took care of the kids while the ladies had a special meeting for just them.  It was nice to give the ladies a break, but wow, the kids were wild!! The men in the church had no chance of keeping all the kiddos under wraps. 

Saturday Sierra and Hunter participated in the May Fete parade.  It was the 95^th annual parade. Sierra played in the PALY marching band and Hunter walked with the cub scouts as they presented the colors.   At the same time on Saturday, Megan played in a basketball tournament in Redwood City. So Stacy and I were moving and grooving to support all the kids.   That evening Stacy kept score for Hunter’s little league game which they lost in extra innings.  It was a good day to be with the family in Calif. 

Now it’s back to Oregon for good week of work in the office and on the ranch.

Till next time.

Friday, May 13, 2016

Haven’t been able to get this epistle posted to our blog.  Something was wrong with my log in and I haven’t taken the time to figure it out.  Maybe Stacy can help her dear husband.  Anyway, time keeps matching on. Now, lucky Friday the 13^th, I am flying back to Calif to spend the week.  Feeling a bit guilty leaving Dad and Jake with so much ranch work, but also very excited to be with the family. 

Business as usual in Calif, except for one experience with Gage.  A few days ago he threw up blood and didn’t feel good.  That got everyone excited.  Gage was checked out at the ER and nothing major came back.  They think it was his feeding tube irritating something somewhere. Did not seem to be major bleeding anywhere. So he is back home at the RMH feeling good again.  Of course we always have him under a microscope watching his weight, energy level, fluid intake, nutrition, stool, temperature, INR or blood thinning level, blood flow through the machine, and any kind of sneeze or cough that seems out of place.  

Honestly, we are tired of all this.  We still just want to go home and not worry about all this stuff.  But that ain’t gonna happen for a while, so buck up.

 

Sierra has a biopsy this Tuesday the 18^th.  This will be the ‘annual’ biopsy where they go in through the leg and check her coronary arteries, heart pressure, and rejection.  I wish they only did biopsies annually, but for Sierra, that isn't going to happen for awhile.  Nothing to update on her lupus.  Really hoping her rejection comes back negative!

Megan’s softball is over.  It was a good experience, but not sure she will do it again.  We are not thinking she will get a scholarship anytime soon based on her softball skills.  Hunter’s baseball is almost over.  They are in the post season tournament with double elimination.  They lost their first game and won the second.  They play again tomorrow.  Coach even let Hunter pitch a little this last game.  Hunter was excited to give it a try.  He threw a few strikes out of about 20 pitches.  The game was already decided before the coach let Hunter pitch.  They even gave Hunter the game ball after the game,  he was pretty proud of that.  He wanted to call Ryan Lynd, his coach in Oregon, and let him know that he pitched in his first game.

That is about it for now.  I am sure there are other witty, funny, clever, insightful, interesting and thought provoking comments I could make, but I sure can’t think of them.

 

Till next time,

Jason

 Mother's day morning (notice the awesome crapes)

 The women in my life

 Sierra and the PALY marching band

Check this out Eastern Oregon, this is a horse drawn carriage, Palo Alto style. 

 Lindsey last middle school dance.

Hunter marching with his scout troop in the May Fete parade. 

Mother's Day breakfast of crepes. 

Hunter pitching for the first time in one of the play off games. 

Sierra at her spring band concert in the new performing arts center at Paly. 

Gage was sent "Flat Stanley" by his cousin Ryleigh in Utah.  He came to have some adventures with Gage in California.  This is flat Stanley holding Gages favorite stick.  Gage has had this stick for over 2 months.  He hides it in the bushes at the hospital when he gets there for school.  Then picks it back up when he comes out from school and carries it with him (hitting plants and light poles all the way) back to the Ronald McDonal house.  He then hides it in the bushes there.  So far, no one has stolen or removed his stick.  It is always there when he goes to get it. 

Flat Stanley at Gages Dr. appointment.

Riding Bikes and Pickles

Stacy here, it was so nice to have Jason surprise me and be here with us this week.  It is helpful to have an extra driver to take kids to activities that are all at the same time.  BUT, more than anything, it was nice to have our family COMPLETE!!  He left today and will be gone for 2 weeks this time.  We are sad to see him go, it gets harder and harder every time he goes, for all of us. Jason, sad to be going home to an empty, lonely house and the rest of us missing him here. Having him here to participate in our family activities (sports, concerts, playing, etc).  We know this won't last forever, but it is sometimes hard to see to the end when it just keeps going.  This week marks a year when Sierra and I came for her transplant.  Other than a short 2 months we were at home for September and October, we have been here for a year. We are looking at the calendar for this month and repeating some of the same stuff we did last year.  All fun stuff, such as the hospital prom and the San Jose color run.  It's just a little de' javu and realizing how long it has been.

Anyway, on with the events of this week.  Gage had his clinic appointment on Monday.  He is quite the comedian when asked questions from our wonderful nurse practitioner, Jenna.  The conversation went something like this:

Jenna asked, "So, Gage, what did you do this weekend?"
"I rode my bike."
"Ha, ha Gage, you know you can't do that, what did you really do?"
"I ate some pickles."
"Boy, you know just what buttons to push on me.  What else did you do?"
"I rode my bike and ate pickles."
"Okay, what did you really do?"
"Well I didn't eat pickles, but I really did ride my bike.  My dad and I rode our bikes to Hunters baseball game."

This is funny, because these are 2 things he is not supposed to be doing.  He is on a sodium restriction and can have maybe one small dill pickle a day.  He hasn't had any for a long while, he was just yanking her chain.  However, I didn't know he had ridden his bike.  My only excuse was that sometimes when dad is in town, things are done that mom may not know about.  It was a great appointment, he is doing so well, They are letting him go almost 3 weeks until his next appointment.  No changes were made, just a reminder to wear a helmet if riding his bike and it cannot be in any traffic. Quite the clown!

A while ago we talked to the doctors about Sierra's hair falling out and a rash she had on both sides of her face.  They decided to run some blood tests to test for an autoimmune disease.  We didn't hear anything for awhile and kind of forgot about it.  The falling out of her hair has is back to normal and the rash has improved.  Wednesday morning I received a call from the pediatric rheumatology clinic wondering if Sierra could be seen that day.  Our doctors had sent a referral to them and told us it could be a couple months to get in.  So, I worked out a schedule that we could get Sierra to clinic that afternoon.  When we got in with the doctors, to my surprise, this was not a clinic that they had had a cancellation and were placing Sierra in as a fill in.  They had seen Sierra's labs and were concerned enough that they put her into the schedule to see her that day.  Apparently, there is a lab they drew called ANA (Anti-nuclear antibody). This antibody is seen in people who have lupus.  They draw this lab on all kids pretransplant as a routine lab.  Sierra's level was low before this transplant.  The level now is "much" higher post transplant.  This could be indicative of a "drug induced lupus", meaning one of the medications she is on could be causing the lupus.  The only problem is, she is already on the medications that they would treat this with.  We were told, "she is a very complex case."  So, for now they are not going to do anything.  Sierra had 10 vials of blood drawn on Friday for further testing to get some more answers.  She is to see rheumatology every 3 months and get a dilated eye exam to have her veins in the back of her eyes looked at.  She is to wear heavy sunscreen or a hat outside and if they see any tan lines when they see her next, she is in big trouble.  My heart just ached for her, can't this poor girl ever get a break?  It is always something.  She takes everything so well and is always so happy and helpful.  She is trying so hard here at school and making some great friends.  I just wish for a little while she could be "just a teenager" living a care free life.  We will have more answers in a few weeks, but for now, we are not going to worry until the doctors tell us to. Kind of took the wind out of my sails for the week, but we will just keep swimming.

Megan had a choir concert Friday night.  She did a great job. 

Jason and I were able to go out on a quick little dinner date before he left.  It was so nice!!