Sunday, September 20, 2015

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.


Saturday, September 12, 2015

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.

Monday, September 7, 2015

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!
 

Sunday, August 23, 2015

Sunday morning

Saturday was a great day. He had Susanna as his nurse, she was one of the favorites from the Lindsey days.  He had a chest x-ray and a checkup, and then was released around noon.  We wanted to do something fun, but easygoing.  So we decided to drive to Watsonville to pick / eat strawberries.  It was fun getaway.  Gage seemed to really enjoy it.  Sierra drove the entire time.  She is getting there on her driving.  There were only a few times I had to grab the 'Oh Crap' handle and pump the imaginary brake, but as Sierra said, "Ya, I know Dad, but we are still fine"

Good to all be sleeping at the RMH, especially with Gage nestled between Stacy and I (grrrrr). Sierra enjoyed the other queen size bed ALL to her self. Good thing I love my kids.

Church today and count our many blessings! Pack up tonight. Sierra's biopsy Monday at 8 am and Gage's clinic at 9:30, then hopefully....
 Watsonville strawberry patch


 Hopefully it will be many moons before we return to this room.



 Nurses Susanne and Danise from the Lindsey days

  

Friday, August 21, 2015

Finally Friday

Watching this chest tube drain can drive you insane.  And yes, we have been watching it! It really doesn't matter how good he looks and acts, or how much our other 3 kids and life is waiting for us back in Oregon, or that school starts soon and the kids are not ready, or that the beans in our garden are ready to pick, or the work I have piling up at the office, we can't leave until the tube is out!  This has been a good exercise in the need for patience.  Sometimes I have to just step back, take a deep breath, and be patient.

Having said all this, Stacy and I really have been watching the tube...and... Lo and behold... he made it. At 4:00 pm, the chest tube put out only 60 ml over the last 24 hours, which is the minimum it needed to be.  That means it can come OUT!   We asked the nurse about it, and she confirmed it.  At first they said they will wait until morning to pull the tube just to be sure, but they could feel a little (okay maybe a lot) of resistance from Gage's parents.

So now, after some Adivan, and and a good nurse practitioner, Gage has been freed from his leash. The chest tube is out, 1 week after the surgery.  He was pretty scared as they pulled the 14 inch chest tube out and sewed up his new belly button.  

Before discharging from the hospital, they will do an x-ray tonight and an echo / x-ray in the morning to look for air pockets and fluid.  So, pending something major, he should be out of here tomorrow morning.

Now it is back to Sierra.  She still has a biopsy on Monday morning, after that we are heading for Donner Pass and home sweet home.
 Getting ready to pull it out
That is it
He is still feeling a bit dizzy from the Adivan
It's out of here!!
A celebration selfie


Thursday, August 20, 2015

Thursday, Day 6

Six days post surgery and he is improving everyday.  He feels better, no pain, eating morer, goes to school, getting his goofy personality on, BUT the chest tube is still draining.  The rule is it can only drain 60 mls in a 24 hour period.  Right now he draining about 100 mls.

I was able to get some computer/office work done, Sierra went to school and hung out with Nori, and Stacy spent some time at the RMH being a mother.

Had some good friends from the 'Lindsey' days come by for a visit.  It was very nice of them to come by, visit and bring some food.

Basically we are all doing fine, just really missing our kids back home.

Gage and his friends showing off the Lego airplane
 Stacy and Gage working on a Lego plane

Time for a dressing change
Brings back all kinds of good memories