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.

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