Rejected

Today was a really fun day at Gage and Hunter's school.  They had "field day."  The whole school participates.  They are divided into 3 different colors and  by grades.  There are 11 different stations that have all kinds of activities.  Everything from dancing station to obstacle course to snack station.   It was the best physical therapy Gage has had.  His legs were pretty tired by the last station.  Mrs. B (Gage's teacher) and I even participated and became a little competitive.  She is a pretty fast lady! After school, Gage had the last baseball game of his season.  I'm so glad he was able to attend it.  As the school year is winding down, our sports and extracurricular activities are winding down as well.

Which brings me to my "rejected" topic.  Today I received a call from our nurse practitioner.  She told me that they were going to really slowly wean Gage off of his prednisone (steroids).  Usually they do this rather quickly, where they are on very low doses at 6 months.  With Gage it will take until 9 months, possibly even longer (yeah for the eating, bummer for the side effects).  She also told me that the doctors had met and none of them felt good about Gage leaving at his 2 month mark.  With his severe rejection and kidney failure, they want him a lot more stable before going home.  So, we will start our 3rd summer in a row here in California.  Hoping it may only be a couple weeks longer than when we had hoped to leave.

I tried really hard not to get my hopes up at the thought of going home early, knowing that the idea could easily be turned down.  BUT, I couldn't help it.  Just being home all of us together under our own roof was too much of a good dream.  So, I ended up being really disappointed when we were told what the doctors had decided.  Jason is really busy at the office and ranch.  Thank you so much Jeff and Josh for coming and helping him out.  Deeply appreciated. Not to mention, our 20th anniversary that will be spent, yet again, in different states.  As well as the question of what to do with the kids.  So much work to be done at home on the ranch, yet, Jason can't be there to "encourage" them all day.  Do they stay here in California with me until we can go home, do we bring Megan back to be with us in California, do we send them home?  Decisions we were really hoping we wouldn't have to make, but as always, we will work through them.

Hunter at the dance station 

Swimming at Last

We had a very enjoyable and busy weekend.  Friday night started with the annual hospital prom.  This is our 3rd prom in a row that we have been able to attend.  Each one we look forward to.  This years theme was "Western." Which just happens to be right up our alley.  Jason brought back from Oregon some of our western clothes, such as; boots, chaps, spurs, bandanas, hats and vests.  The kids were really excited.  For those who have never experienced the hospital prom, it is quite a special night.  The  hospital school staff start planning this at the very beginning of the school year.  They put A LOT of time and effort into making this a great night for kids in the hospital.

This year was another success! They had booths for games, prizes, face painting, "Larry the Lasso" cowboy, 5-6 players from the 49ers, a DJ for dancing, food and Black Jack tables.  There was something for everyone.  Gage spent most of his time at the food table or the drinks.  There were some of his nurse practitioners there and I gently explained that there was no way I was going to keep track of his sodium and fluid restriction that night.  He was constantly eating or drinking.  Hunter enjoyed the dancing aspect after a few games.  Lindsey enjoyed socializing a little with her good friend Kirtana, then worked up the dance floor as well.  Sierra was Gage's date, so she followed him around to the games he played, then went to the dance floor to bust some moves as well.  Jason and I walked around and talked with a lot of the families we have met over the years at hospital school or through our stays at the hospital.  It is always so great to see them and catch up on how their children are doing.  It was such a nice evening.  I even found a moment to take in, 4 of my 5 children, laughing and having a good time on the dance floor together.  Oh how we missed Megan!

Saturday, Gage was able to swim for the first time in almost 2 years.  He was really nervous at first. He felt like he had forgotten how to swim.  Once he was in the pool he relaxed and had a great time.  His baseball team had their end of season party, so he was able to swim there.  Then we were able to go to our dear friends, the Van Elderen's, where we stayed last summer.  Gage finally got to swim in their pool.  While on the VAD, he could never go in further than his knees.  It was so nice to see Dan and Judi and catch up.  Such wonderfully amazing people!

Jason flew back to Oregon Saturday night.  The stress of ALL his work is mounting higher.  With the warm weather at home, it is time to get the water going on our grassy fields.  Office work that is left over from a tax season interrupted by a transplant and many other tasks that have been neglected. Oregon is where he needs to be right now.

School is winding down here in California.  The kids have 7 more days of school (not that their counting, but Lindsey could tell you to the hour).  Which brings us to our biggest question, "Now what?"  Do we send everyone home to Oregon when school gets out and just Gage and I stay? Do we bring Megan here and stay for the last month together in California? Or my favorite, do we ask to go home early and spend the whole summer together as a family? Wednesday, Gage has clinic, and we are now ready to present them with the question of going home early.  Gage will have a biopsy on the 31st of May, if that is a 1A or a Zero, I will have to have a pretty good reason why we can't go home.  I feel we have put our time in and we aren't new at this.  We will be returning 2 weeks later for another biopsy, but at least we could be in our home and together as a family.  Wish us luck, as we have a busy summer planned, in pencil, on the calendar.

UGHHH, so Frustrating!

Well, biopsy results are in.  Gage received a 1A, which they say is essentially a zero, so I guess that is good news, right?  This means that the steroids are working!  His appetite is great, we were able to pull his feeding tube yesterday after biopsy.  He was one excited little guy.  There are always some funny stories of our kids and their obsession of food while on steroids.  Gage is no exception.

Tuesday night when the kids went to bed, I explained to Gage that he couldn't eat anything after midnight and he could only have clear liquids until 6 in the morning. At 12:30 AM, I felt a repetitive tap on my shoulder and startledly woke to a cute little chipmunk face right next to mine.  After jumping, Gage, in his cute little voice asks, "Mom, didn't you say after midnight I could drink clear liquids?" Thinking of how grumpy he was going to be if he didn't drink something, I was thinking a Powerade was a great idea.  So, he excitedly got the 986 mL Powerade and I opened it with the explanation that he could only have slow sips and not drink the whole thing.  He consented to the instructions and went to bed.  When I woke up that morning at around 5:30 AM, I looked over and there sitting by his bed was an EMPTY bottle of Powerade.  I was shocked, here everyday for 512 days I begged him to drink that much in a day.  Now, I have to hide the drinks and tell him to slow down, since he is now on a fluid restriction.  It's a great irony.  He is eating very well and is ALWAYS hungry.  A nice change for once.

On to the frustrating part, Sierra received another 1B.  This is NOT like a 0.  She keeps having these 1B's (grrrrr). Her last biopsy was a 1A, but the 3-4 before that were 1B's.  So, she will be seen in clinic in 2 weeks and repeat biopsy in a month...again.  The good news is her coronary arteries look pristine.  Her poor neck is thick with scar tissue from so many biopsies and they are getting more and more painful as they have to push through the scar tissue to do the biopsies. My heart just aches for Sierra.  When will her break come?  She is constantly struggling with different aspects of her life and her heart always has to be one of those. School doesn't come easy for her, she always wishes she had guys ask her out on dates, not to mention the younger sister that is right there shining in everything she touches (not that we aren't proud of Megan). Sierra is such a kind hearted soul and mature beyond her years.  I just wish she could catch a break for once.  You wouldn't know any of this is going on in her life looking at her.  She is always positive and just acts like life is great.

News like this is always a little bit of a blow, as we find ourselves getting excited to FINALLY be able to go home.  Then this happens and I feel like, "Man are we ever going to return to our life in Oregon, and if so, for how long?"  Three kids with heart transplants, the odds are not in our favor.  It will happen some day, and when it does, we will treasure every moment we have for as long (or short) as it lasts.

Ready for biopsy!

Trying a new distraction technique in the biopsy room.  Virtual reality movies.  Worked great until he was turning around backwards in the bed to see what was playing.

 Below, biopsies are all done.

Gage played his first baseball game today without his backpack.  He was really excited to play the last few games of the season.

 Pack Meeting tonight.  Gage received his wolf and Hunter his Webelos badge and Arrow of Light.  Way to go boys, really proud of you.  Thank you den leaders for all your work and effort in helping them get there.

Gage's cute chubby cheeks at Sierra's last band concert of the year.

Happy Mother's Day!

Happy Mother's Day to all you mothers! We are back to updating once a week, which is a good thing.  This means we are not sitting in a hospital room with nothing to do but worry.  I had a great birthday, thank you for all the birthday wishes.  Gage's teacher made it a very special day at school.  No going under the radar for me.  She had the kids make a fun birthday book, made special cupcakes and had Hunter and Jason join us for the party.  Very above and beyond.  Thank you Mary!!

Gage had a great week with just a little bump.  He was able to attend school every day this week.  He did great Monday and Tuesday.  Wednesday he had clinic and his blood pressures have been a little high.  In the 130's /90's.  His goal range for his blood pressure is 110's /60's.  We are a little sensitive to this as his seizure was caused from high blood pressure.  So, the doctors adjusted his blood pressure patch.  The dose was doubled from 0.1 to 0.2.  The other change they made, was they decreased his feeds to 1 can instead of 2.  Gearing toward getting his feeding tube out!.  We left clinic and headed back to school after placing the 0.2 patch for blood pressure.  He did great, but started acting a little tired as the evening proceeded.  Thursday he was hard to wake up, fell asleep at breakfast, slept through recess and lunch and slept as soon as school was over.  Apparently, we over shot the blood pressure patch.  The doctors had us change it back to the 0.1 patch Friday morning, and by Friday evening he was starting to act like himself and not a ZOMBIE.  We had a great day yesterday and he is laughing and giggling and acting more like himself.

Hunter had his baseball playoffs this week.  It did not end well unfortunately.  He lost his game Monday and ended the season with a loss on Wednesday.  He was a pretty unhappy camper Wednesday night.  I sure felt bad for him, but there wasn't a lot to say to him as he wasn't in the mood to hear anything positive.  Good thing he can sleep those things off and be in a great mood the next day.

Jason returned to Oregon on Tuesday where he could try and catch up on a lot of the work there waiting for him.  There is so much pressure on him from so many angles.  Between the part of his family here in california, Megan in Oregon, office work and issues to attend to there, and all the ranch work that needs to be done, he is carrying a HEAVY load.  It will be so nice to help take that load off when we can all be home together.  He will return here to California on Tuesday, as we have activities this week that will require 2 parents.  Sierra and Gage both have biopsies on Wednesday.  Sierra has her biopsies without anesthesia and Gage has his with general anesthesia (for now).  This places them at different areas of the hospital recovering in different areas.  Physically impossible for me to be 2 places at once, so Jason is coming back to help with  that.

We are a little nervous for Sierra's biopsy and Gages for that matter.  Sierra is our little wild card.  We're never sure what she is going to throw at us for results. There is also end of year band concerts, other clinic appointments for Hunter and Lindsey and baseball games for Gage.  He is 6 weeks post transplant, which means he is off sternal precautions and can go swimming and play baseball.  He is really excited about that. It will be nice to have Jason here for all these activities and appointments.  We will celebrate his birthday early while he is here and then he will return to Oregon the following Tuesday. One day we will be able to spend ALL of Mother's day, my birthday, his birthday, Memorial

 day, and Heaven forbid our Anniversary together, instead of in different states.  But, not this year.

Happy Mother's Day to my wonderful mother.  Mom, you taught me what it is to be a loving, nurturing, and caring person.  Thank you for calling to check in with me and for all you support.  Thank you for always being there when I need a recipe or suggestion for dinner or any other hair brained thought I have.  Thank you for being you!!

And Happy Mother's Day to a wonderful mother-in-law.  Les, you are such a great and supportive person.  You always drop whatever your day plans were and take my kids if I need you to or help me in any way. You are a very selfless person. Thank you for looking after our place as we are not there and trying to find recipes for me when I need them. 😉

I love you both and feel so very blessed you are in my life as such great examples!

Gage and I at school, he laid down and fell asleep shortly after this picture. 

 We had the fun treat of spending Friday afternoon with the Thornton's.  Ben had a biopsy and he received a ZERO!! Congratulations Ben.  A group came into the RMH and helped the kids golf.  It was a lot of fun! 

We were able to go to the temple yesterday.  My most favorite places!

May 7th. Sunday evening

Sorry for the delay.  Life started moving again. So Gage’s biopsy results came in at a 1a!!  This means the steroids did the job!  With that news they released the Mr Aurelius from the hospital Saturday afternoon, hopefully for the last time?? Who knows?  There may be something down the road, but not now. 

Going forward we hope things normalize a bit.  Stacy and Gage will go to his normal school at Nixon.  Gage also hopes to attend or even lightly play in his remaining Little League baseball games.  His Cub Scout leader would love to see him on Thursday nights.  Hunter has more playoff baseball games. Sierra has an upcoming band concert and tests, and Lindsey has the 7^th grade drama to deal with.  Megan is still in Oregon and excited that she might even have a family to live with soon.  I will be spending quite a bit of time in Oregon as the ranch work heats up and the office and home responsibilities roll on.  Basically, we don’t have time for anymore of this rejection, or heart, or kidney, or blood pressure, or seizures, or whatever else there might be.  We are ready for someone else to take a turn.

Friday night we had Terry and Jennifer Pickeral come by for a visit. Terry is my father's cousin and made a very special trip here to see Gage and the crew.  It was very kind and very uplifting.

Tomorrow is Stacy's birthday. Big four O!  It will be fun day of school, and Hunter's baseball.

We are asked on occasion how we handle the pressure, uncertainty and stress of 3 heart transplant kids.  For the most part we just ‘keep on keepin on’.  Our kids need us to be positive and upbeat.  They need to see us going on with the most normal life as possible.  We have had to change many things about our lives, but we just keep going.  The only time we really feel the stress and start to break down is when there is an acute medical problem and we can’t see the outcome.   The strange and quite unique issue about heart transplant kids is that they usually have an option, there is always a plan B.  There is either a Berlin Heart option, or Heart Ware, or the long awaited transplant.  The times we feel lost, depressed, overwhelmed, or deeply emotional is the times a heart transplant or heart machine does NOT fix the problem.  Those times include (but not limited to) Sierra’s heart failure 10½ year ago (no Berlin back then); Lindsey diagnosed with the same heart disease Sierra had (the thought of going through that again), Sierra’s 2^nd transplant (no Berlin option); Sierra, Lindsey and now Gage’s seizures (fear of brain bleed/stroke); Gage’s heart rejection and related kidney failure last week (fear of loosing him); and when Gage contracted RSV /para-influenza when he was only 3 months old (many of you don’t know about that one).   These were times we felt lost and leaned on the strength of others to get through it.  These were times we prayed to God with all the energy of our soul.  These were times many of you gave use support, encouragement, meals, and even joined us in sincere prayer and fasting.  These were times we would break down outside hospital rooms too scared to go back into the room.  But now those times are past.  Hope those days stay in the past.  Unfortunately, statistics tell us there will be more issues, some we may and some we may not have options for.  But for now we are truly blessed to have 5 healthy and recovering kids.   There are many others that are not that fortunate. 

Till next time,

Jason

   

 These are Sierra's awesome PALY friends, Tomer, Dillon, Theo, Nori, 

Gage when he was 3 months old with RSV / Para-influenza.