Sierra's biopsy and update

Holy Cow, it has been over a month since we updated.
It has been a very busy 5 weeks. Some of the highlights include:
- Megan volleyball
- Lindsey volleyball
- School and work
- Sierra's drivers license (lookout)
- Stacy and I's visit to Elk Camp
- Deer hunt with all the kids.
- Sierra's Homecoming date
- Sierra's biopsy
- Gage and Lindsey appointments and updates

Friday, October 23
First Sierra's biopsy.  Sierra had her monthly biopsy in Calif.  We stayed with our good friends, the Zengers.  We had great time with them. Even went to an MLS Soccer game in San Jose. That was a first time for us.   It was also nice to see all familiar faces at the hospital from Les the parking attendant, to Heidi, Donna, Ping, and Dr Chin.  Biopsy went very quick with no complications, but her heart pressures are back up (grr). They went from around 10 last month to 14. Nothing alarming, but something to watch. A perfectly normal heart is 5-9.  They want to make a few adjustments to her meds as usual. Increase her lasix to twice a day. This will hopefully pull some fluid off to assist with the high heart pressures. Also planning for a long-term prednisone treatment.  We are NOT excited about that!  Right now she is on 5mg of prednisone twice a day.  IF she has a good biopsy result and that is a big IF, then they will go to 5mg in the am and 2.5 in the pm.  Then after that they will go to 5 once a day. Then...if she continues to have good biopsy results a few months from now.... they will leave her at 5mg once a day.   That means she will stay on the additional 5 other meds that offset the side affects AND a little puffy will hang around (no fun).  They want to do this regiment for an extended time....like years.  The reason for this adjustment is to defend against antibody reject.  Even though she does not have antibody rejection (AMR), with her history and higher heart pressures, they want to be conservative.  So now we wait for the biopsy results tomorrow.  Hopefully the higher pressures does not mean rejection.  Have to see.  Flying home Saturday and waiting for biopsy results. All in all, still doing good for only 4 months post transplant.

Heidi, and Dr Ping 

 San Jose Earthquakes beat Kansas City 1-0.  This was the same time, the Aggies were beating BSU back in Logan 56-26.  That was awesome!

 Another great Angel Flight pilot.

Sierra's good friend, Nori Zenger.

Went to the Halloween store and found a great Minion outfit.

Gage and Lindsey had checkups in Boise on Friday.  Lindsey is still doing absolutely perfect. Nothing to report there.  She will go to Calif in 3 months for a biopsy.

Gage is a different story. Over the past 2-3 weeks we have noticed a drop in his appetite and activity level, and increased tummy aches.  Stacy and I understand we are hypersensitive to this, but after going though this 3 times, we believe we have a right to.  Several weeks ago, Gage wanted to play YMCA basketball, but since then, he has lost the energy and desire, so Stacy dropped him from the team.  He has had a few 6 beat runs of V-Tach, but nothing that has made the defibrillator go off. It would have to be a 30 beat run for that to happen.

At the doctor's appointment, they decided to add a few meds to his regiment and continue to watch him closely.  His next appointment will be in late November in Calif.  Bottom line, he is doing fine, but on the road to transplant. Who knows how long.  Doctors think anywhere from 1-2 years away. Stacy and I think it will be sooner, like 6 months.  

Enough of that, other fun items to catch up with.
Sierra passed her drivers test, so look out.  She has been driving the ole' Mazda back and forth from school, dance practice, and early morning seminary.

Sierra also went to homecoming.  She went with Seth Yeck, my good friend Jeff Yeck's son.  The entire Yeck family drove up from Burley, Idaho just to support Sierra with her dance.  Very nice of them.  Anyway, Sierra, Seth and some other friends went to the dance and then to the haughted house over in La Grande. She looked great and had a fun time on her first date.

 Sierra and her date, Seth Yeck.

 Megan and Logan getting all dressed up, along with Axelrod.

 Dad and his 4 studly sons.

 Our dear mother, along with her 4 boys.  Wish Garrity was with us.

Megan is playing some awesome volleyball. She has worked hard as a freshmen and fought her way onto the varsity team.  Stacy and I love to travel to where ever she is playing.  Today, they have a big game against Helix.  Sierra and I should make it home in time for that.

Lindsey is playing junior high volleyball and then YMCA volleyball after that.  She feels good and works hard at it.  We fully believe her skills will get there.

Had our annual deer hunt.  We all look forward to that.  Took 12 kids, 5 adults and 1 deer tag.  It is mostly a deer camp rather than a deer hunt.  Roper did fill his tag with a nice buck.  Jake, Dalley Jo, and Roper worked hard to hunt into this guy.

 Down Packsaddle with Hunter

 Hunter and I at the spring in Packsaddle.  Hunter and Keanna are the first kids to make it here.  TOUGH hike. I was very proud of them.

 Hangin' out at Deer camp

 See Justin and Keanna?

Jake explaining how they hunted into Roper's buck.  Great story.

The crew

Last of all, Stacy and I rode horses into elk camp.  It was tons of fun to get out with Jon, Blake and Dana. After we left on Saturday afternoon, Blake's horse, Mister,  ran off with his hobbles on.  It took them 2 days to find this horse.  Many of us thought Paige's precious horse was a wolf bait, especially with hobbles on in very thick timber and rocks, but Jon found him in the rock ledges Monday afternoon. What a guy.

I think that catches us up with our family.  Stacy and I are doing good.  These heart issues are still hard on us.  Especially when there doesn't seem to be an end is sight.  We count our blessings, don't take our time in Oregon for granted, keep the faith, and love to support our kids in whatever activities they are involved in.

I will let you know the biopsy results when we get them.
Till next time,
Jason

Sunday night, October 18
Heard from Calif.  Big ole FAT ZERO!!  Put that in your book!  So we drop the prednisone to 5 and 2.5 and head back in a month.

Megan's volleyball team won against Helix in an exciting game. Final match was 33-31. Megan played a little, and had one good block.

Just to put a pimple on the pumpkin, Gage's tummy hurts tonight and wouldn't go out to play with Range and Brand.

To quote Stacy's 21 Day Fix workout video, "It's a journey, not a destination".

Sweet 16

Happy Birthday Sierra,
It was been a good week. Plenty of school, work, sunshine, and volleyball. Today Sierra turned 16!! She is hoping to get her drivers license soon, look out!  It's all good except for driving the Mazda, our 1997 stick shift car with 332,000 miles.  You don't want to eat much before or even take food with you while she is driving the stick, cause it is either coming up, or you are wearing it. But it's all good. I keep a firm grip on the emergency brake, if needed.

It has been fun to go to both Lindsey and Megan's volleyball games.  Both are trying hard and doing great.  Honestly, we can't wait for the next games.

Nothing much to report on our kids medical condition.  All continuing to improve.
The only deep down fear I have is Gage.  You can see it coming, could be tomorrow, or it could be years from now, but his turn is coming.  The other day he was fatigued and complaining of tummy aches.  Stacy and I didn't say anything, we just comforted him and got him to bed early.  Today he has been acting great and eating good.  So, we just roll with it, knowing it is coming. Still grateful to be home.
That is it for now,
Jason

all kinds of help

 Little birthday cake action.  Lindsey Lou lending some help?

Call from Aunt Kelly

 Sunday dinner out on the lawn.

It's Time for the ZERO Dance

Stacy here.  Sierra, Gage and I made it to California Friday.  It was an adventurous trip.  For the first time in 9 years, that we've been traveling here, we missed our direct flight to San Jose.  We hit some construction traffic on the way into Boise. So, a very nice worker, got our flights switched and heading the right direction.

Friday, was a day full of appointments.  We started off with Sierra's biopsy at 7:00 AM.  Her pressures were great and we received word this morning that her results were a ZERO rejection!! While Sierra was recovering from biopsy, I ran Gage to get labs for his clinic that was later that day.  After Sierra was done with her biopsy, we ran her blood sugar monitor over to the diabetic clinic (across the street from the hospital), since we missed her appointment the day before due to missing our flight.  After a quick lunch, it was Gage's turn for appointments.

Gage had a pacemaker check and an optimization.  This is a LONG process.  There is a doctor, a nurse practitioner and a echo tech in the room. They have Gage hooked up to about 6 leads on his chest.  The nurse practitioner (Deb) adjusts his pacemaker by what settings the doctor is saying as he is watching the echo.  They have to do this for each chamber of the heart.  It took almost 2 hours of Gage lying on his side and holding still.  Thank goodness for the TV in the room, that helped immensely.  After the settings on his pace maker are where they want them, they check them with an EKG.  It was a little unnerving, to watch his heart on the echo (an ultrasound of his heart).  His left ventricle was obviously much larger than the other 3 chambers of his heart.  You could see the blood twirling around in the ventricle not quite getting pumped all the way out.  They did start him on aspirin to keep a clot from forming in his left ventricle after his surgery.

After his optimization we were seen by the heart failure doctors (our transplant doctors).  Really no change with him.  They are increasing one of the meds he is on, and want him seen monthly between them and Boise.  You almost get the feeling that they are just waiting for him to start having the symptoms of the failing heart they see on his echo's.  His appetite isn't great yet,  his eyes are much bigger than his belly.  BUT, he is interested in food, so that is always a plus. He is getting better each day in recovering from his surgery, a little more active.  The last 4-5 days, he has actually acted the most like himself since his surgery.  So, to summarize his visit, he will be seen in Boise in October, then return to California in November with Sierra's biopsy.  They are going to do a test on him in November that is similar to a treadmill test for endurance.  To see how much exercise his heart can endure, only a pediatric version (he walks in between cones for 6 min.). He did have a small run of V-tach that was 6 beats.  Nothing alarming, his defibrillator is set off to go after 30 beats in a row.  It has not gone off yet, and hopefully we won't have to witness it.

Once finished with his appointments, the diabetic team was nice enough to squeeze us in to see Sierra.  All is going well with her diabetes.  She is on very little insulin at this time.  It seems to be doing the trick and keeping her sugars where they need to be.  The dietitian came and discussed with us what foods are high in carbs, she was adamant that she didn't want us to worry about counting or a particular number.  The rule is to take your blood sugar 2 hours after you eat and if it is high then you see what you ate and know it was too much.  Sierra was delighted with this news, as she didn't feel the need to "watch" what she was eating. Finally at 5 PM we left our last appointment, it was a long day.  We decided to go and eat at one of our favorite places California Pizza Kitchen.  Sierra decided to order the 4-cheese pizza.  It is a personal pizza the size of a large plate.  She had worked up quite the appetite and ate 3 of the 4 slices.  Needless to say, when she checked her blood sugar 2 1/2 hours later, it was 303.  Way to high!!  This was one of those instances where we look back and realize, "maybe a little bit to many carbs."

We are hoping to be home by late tonight.  It has been nice seeing our friends that are still here and catching up with how they and their children are doing.  Megan and Lindsey had volleyball games this weekend.  It sounds like they both did really well yesterday.  We will be excited to go home and hear all about how they did.  So glad we live in the day and age that we do and for these amazing doctors and nurses that take such good care of our children.

 Gage right street his blood draw.

 Sierra after her biopsy. Eating some lunch.

 Gage done with the optimization. Sitting still for the EKG.

HIS VIEW.

Labor day, Lost track of time.

It's Sept 7, Labor Day,  so I guess it has been a couple of weeks since we have updated.

We drove home Monday after Sierra and Gage's appointments.  It was very exciting to come home, be all together, see family, friends, our dog Axelrod, our garden, and just be home.  It did not take long to get back into our lives. Crazy how our 'lives' were waiting for us once we all got home.  Stacy jumped back full steam ahead in her nursing, school nurse, canning, cub scouts, and being Mom.

To rewind a bit, Sierra had a good biopsy.  She had good low heart pressures, no antibody rejection, and a 1A on her regular rejection.  She is still taking insulin and checking her blood sugars 3-4 times a day.  Gage is doing okay.  Still complains of chest and tummy pain, and won't eat much.  Seems to be handling the increase in meds.
 
School is in full swing, with 2 girls in high school, Lindsey in 6th grade, Hunter in 4th, and Gage loving the 1st. Stacy works every Monday as a school nurse, and every Wednesday as a labor and delivery nurse.  Lindsey is playing junior high volleyball and is working hard at it.  Megan is playing high school volleyball and is loving it.  Stacy and I both loving going to our kids games.

Today, Labor Day, we got up early and headed to the mountains to get some firewood for my parents. Took everyone but Gage plus 3 cousins, so things were hoppin'.  Not sure how much heavy lifting Sierra should have done.  I will leave it at that.

Stacy, Gage, and Sierra head back this week for biopsy and checkup.  Hopefully it is a nice short visit.

Till next time,
Jason

 Prairie City tournament

 The Crew

 The HARD working crew.

 The muscle!