Not the News We Were Wanting to Hear With Gage

Gage had his 6 month routine clinic visit.  He hadn't been seen since February.  At the end of May we had his pacemaker checked since he was here with Sierra.  This is where they put a monitor over his pacemaker and read the events of his pacemaker over the last 3 months or so.  When they did this in May, everything looked great.  His battery still had a couple more years on it.  They checked his pace maker again this check up and found that on June 4, at 12:30 am he had a 17 beat of V-tach.  This is where the heart isn't really beating, it is just spasming ( that is the best I can describe it).  He then had another episode 2 days later at 1:00 am, but for only 7 beats.  This gets the doctors all worked up.  For one thing, it is showing that his heart is getting worse.  Another is, if his heart goes into a v-tach episode and it doesn't come out, he could have a heart attack.  Both of these episodes have happened while he was sleeping.  There would be no way for us to pick up on it.  His pace maker is meant to help pace the heart, making sure that the ventricles and atrium's are pumping in the rhythm that they should.  So, it does not help the v-tach episodes.

Wednesday morning (as Jason, Gage, Hunter, and Mean were passing through Winnamucca) I received a call from the nurse practitioner with Gage's lab results.  They drew some labs on Tuesday after his clinic.  I thought it was just to check his kidneys, since he is on diuretics.  Apparently they added others.  One they drew told them that Gage was not getting the nutrition his body needs (not a surprise there), we are constantly forcing him to eat.  Sometimes he eats well, other times it is a losing battle.  The other test they drew, for the first time, is a newer test and tells the doctors how much heart failure the person is in.  Normal for this would be in the 300 range.  Gage's numbers came out at over 3,000.  They don't know where Gage's baseline is, as this is the first time they ran this test.  Not results you want to hear, this is definitely not the highest number they've seen, but not a number they like to see.  The NP ended the conversation wondering if Gage and Jason were still here because Dr. Rosenthal would like to meet with us.  I don't think he wanted to invite us over for a BBQ.  Usually when he meets with us the news is not good.

Yesterday Dr. Rosenthal called both Jason and I separately, very nice of him.  He told us that they would like to place an internal defibrillator into Gage.  This device would "shock" his heart out of the V-tach episode.  Gages heart is getting worse.  It has maybe 18 months to 3 years at the most before he will need a transplant.  This procedure will hopefully buy a little more time.  Those were Dr. Rosenthals rough estimates of time.  So, Gage and Jason will return when we have the surgery date.  We are wanting it soon so that Sierra and I can still return home on the 19th of August.  This is usually a pretty quick procedure, He will recover for 2-3 days in the hospital and then they will want him close for a couple days after to make sure the wound is healing.

Sierra is in biopsy right now.  She has been feeling better, the bladder infection seems to be resolving.  However, she has steroid induced diabetes.  Her blood sugars have been really high.  The doctors say this happens in 30% of cases of patients on Prograf and Prednisone.  Most resolve as you wean them off the prednisone few don't resolve.  Monday Sierra goes to the endocrinologist to start education on insulin, checking blood sugars, and diet for diabetics.  I told her this will be good education and experience for her, as she wants to be a nurse.

I write this update with that sick pit in my stomach that comes with a visit from Dr. Rosenthal.  I love that man and  all he does for our family, but multiple times he has been the one to deliver the "blow." Sometimes I feel like we are in a lake swimming, we start getting tired from treading water, so we start swimming to the shore.  Just as we get close, we get pulled back with a rope that is around our waist, to the middle of the lake.  We have to start working our way back.  I know we will get through this, we always do.  Someday we will reach that shore again, but for now we will keep treading water.  We will take all prayers offered in our behalf.  If you want to know specifics, please pray that Sierra's diabetes will resolve as she is weaned off the steroids.  Pray that Gage will do well on the defibrillator and that his heart will last him a little longer.  Thank you for all your love and support.  Sorry this is such a long update, but a lot has happened over the last couple days.

 Gage with a monitor on to record his heart activity for the next 14 days.  He is not excited.

On a much needed positive note, Sierra's young women class from home came to see us here in CA.  Very nice of them.  We were able to spend the day with them at Santa Cruz Boardwalk yesterday.  A lot of fun!!  

Well this stinks!!!

Some friends we met in the church own a beach house in Santa Cruz.  They offered their vacation house to us for the night since we were all together.  We thought this would be good fun for our family, and give us a place to stay other than the one bedroom RMH.  So we packed for the night, and heading out in the big red suburban.  We were planning on spending the afternoon in the Santa Cruz vacation home and coming back tomorrow.

Then we got a call from the heart doctors.... Her bladder infection is getting worse and they want to admit her........today....

So, with an awkward silence in Big Red, we turned around. Stacy dropped Sierra and I off here at the hospital. Then she took the rest of the kids swimming. They will be back later this evening. Sierra will be getting IV antibiotics to combat the bacteria that is growing and getting worse.  They are saying she will be on IV's for at least 2 days.

Yes, we are all very bummed.  We all know she will be fine.  We are still planning on coming home around August 19, but this would have been a well needed trip for our family.  A fun, simple, and close place to go before I leave Tuesday afternoon with the 4 younger kids to Oregon.    This would have also been the first time Stacy and I could have our own room since May 5!!! (That is not an exaggeration)

Anyway, enough pitty party.  The nurse is currently putting in the IV.  Sierra has a good attitude. Kids are excited to be going swimming.  Hope to get of the hospital on Wednesday.

Till next time,
Jason

Here for the weekend

Jason here.  It's about time I get a chance to check in.  Megan and I drove to Calif on Friday.  It has been soooo nice to all be together as a family this weekend.  Over the last 4.5 weeks  I have been in Oregon working both on the office and on the ranch.  Been very busy with office tax work, and ranch irrigating and haying.  It was nice to have Megan home for a few weeks, it got pretty lonely around the house.  Needless to say, Megan and I were both excited to make this trip to the good ole RMH.  Since we got here, I have been following (or stalking) Stacy around our little Room 103.  Stacy has been a good sport.

Sierra seems to be doing good.  The only issues I am aware of with our daughter is:
1) High blood sugar level, caused from the high steroids and prograf levels.  Hopefully it comes down on it's own or she may have to switch to another med that makes her hairy (no fun for a teenager). Also she may have to take insulin if the blood sugars don't come down.
2) Bladder infection.  This has been going on for over a week.  The antibiotics don't seem to be fixing it.  Hopefully they can get this under control as well.
3) Emotional stress of being on steroids (predisone).  Lets be honest, she is VERY self conscience of her puffy checks and tummy.  She makes a joke of it, but is getting tired of people making comments or staring at her cheeks and tummy.  She knows she is puffy, she also knows it is temporary. It is something she has to deal with as a 15 going on 16 year old. Today she was in tears from comments from one of her siblings. After Sierra stepped out, Megan proceeded to chew out her siblings for the comments made to her sister.  I was very impressed with how Megan has acted and stuck up for her big sister.

Other than that there are no other issues with our oldest daughter.

Saturday, Sierra drove us all to Santa Rosa to Aiden's memorial service.  It was very enjoyable trip.  She drove right through San Francisco, along 19th ave, across the Golden Gate Bridge, and up to Santa Rosa.  We picked Lindsey from her transplant camp, Camp Dorthy. Sierra went to it 4-5 years ago.  Sierra loved it then, and Lindsey loved it now.  Then to Aiden's memorial service.  It was a very good thing to do.  So sad to hear the story of Aiden going for transplant with all the excitement of a better life.  Then the tragedy of not making it through the surgery. We knew them well 3 years ago when Lindsey was on the Berlin. And now they have to learn to deal with the loss of their precious little boy.

After the service, we spent some time at Angel, Ben, and Ava's.  Ben received his transplant 9 years ago on the same day as Sierra's.  It was good to see them.

Tonight we went down in the river bottom behind the RMH to cook smores.  It was nice to sit around a little make shift camp fire to cook smores and just enjoy being together.  It's the little things we enjoy the most.

Looking forward, Gage has an appointment Tuesday.  After his appointment, I will take him, Hunter, Lindsey, Megan, and a big ole suburban full of stuff back to Oregon. Then, on August 19, Sierra and Stacy should be coming home, only 2 months after transplant.  That will be nice to get her home before school starts.

It's all good, Jason

 Picking up Lindsey.

 Sierra taking us on a road trip.

Lindsey's camp councilor

 Stacy and Angel

 Breakfast in the RMH.

Stacy's councilor's at Camp Dorthy.

      

   

Doing a Little Service

Sierra had this week off from biopsy.  She is now every other week biopsy until the middle of September.  Her prednisone cheeks have come in nicely.  Hopefully they are down a little before her drivers license picture.  However, as Sierra said, "I renew it in 5 years anyway."  She is doing very well.  Her blood pressures have remained normal and medication levels are stable. 

Sierra met a friend here, his name is Jackie.  He invited our family to come help a community youth group with cleaning up trash on the freeway.  I thought this would be a great opportunity to teach the kids about littering.  My thought was correct.  On Saturday we met at a hotel at 6 AM.  There were 11 kids and 3 adults that attended (counting the 5 of us).  We picked up garbage for 4 and a half hours.  It was an excellent experience for my kids and a good lesson learned.  I really appreciated the opportunity to give back to the city that has been so good to our family.  I am not really sure where Jackie was, but he did finally show up for the last 10 minutes. He also picked up trash on Sunday as well. The kids learned a lot about recycling, toxic cigarette butts, batteries and plastic.  The youth leader was a great guy who took the time to really teach the kids.  Thank you Jackie for asking us to come. It felt good to "work."

Sunday the RMH out did themselves.   They had a non-sleep over, "camp out" in the back yard.  They set up a bunch of tents and had stations to make rain makers, candy necklaces or bracelets, paint, and make s'mores.  Mind you their flame was a little bigger than the one we had down by the rope swing.  Our s'mores cooked on our small can flame, tasted a little better, because they took a little more effort.  After letting the kids play games for awhile, they had story time by the "fire." Then, they had a sing-a-long.  And of course, they had to end the evening with a drawing where everyone received a prize to take home.  So many awesome volunteers helped put it together and man the stations.  It was really neat.  Gage said as we were going back to our room, "That was so much fun!" We are truly blessed to have the RMH and be able to stay in a place where there are so many loving people.  They sure help our stay here bearable.

Monday was a little bit of a crazy day.  Hunter started his basketball camp.  It is Mon-Thurs from 9-12.  He says he is having a good time.  Lindsey left for transplant camp.  Three years ago, Sierra went to transplant camp.  This is a camp for kids age 8-18 that have had transplants.  That is, major organ transplants (i.e. liver, kidney, lung and heart).  Sierra had a great time at it and was really encouraging Lindsey to go.  When Sierra went, we signed her in and left her there to figure things out for herself, as we had to get back to the hospital with Lindsey. Lindsey is a different story.  She was very nervous to go and worried because she didn't know anybody.  We dropped her off, but they were a little behind schedule.  So, I left Sierra there to wait with her while I drove across town to get Hunter from his basketball camp.  I got back in time to sign the needed paperwork and make sure she was all squared away.  Then we stood around for awhile.  I finally looked at her and said, "Well,  I think we will go."  She looked at me and the tears hit instantly.  So, I felt like I needed to wait until she was sitting on the bus before leaving.  We waited awhile longer and then helped her onto the bus.  I haven't heard from the camp yet, so she must be surviving.  This will be such a good experience for her.  We had to have a little talk about attitude. " Either you can go and sulk and think about how homesick you are, or you can take this opportunity to meet some really neat kids that are a lot like you." We'll see how the "pep talk" worked on Saturday.  

Megan is at her volleyball camp in Seaside, OR.  From the sounds of things,  it is a lot of volleyball playing, which is great.  She is having a good time.  Jason and Megan will be coming on Friday, we are very excited to see them.  This is the longest Jason and I have been apart.  I don't know how military wives do it.  My hat is off to you.  

Sierra will have clinic on Friday.  We will see what they say about us leaving at the 2 month mark.

Sierra and her "cheeks." 

Our "cleaning crew" outfits.  The kids made them look pretty cute. 

Saw lots of snails.

Hunter and his good friend Bradey.  Went out for ice cream after playing at the park. I couldn't resist taking a picture of both of them, as you could see their ice cream all over their faces.  Boys!! 

These are pictures from the "Camp Night" at the RMH.  Of course, the first place Sierra went was the station with food. 

Jenga and Twister were some of the games they played. 

The "fire pit" for the s'mores, 

Lindsey's bus for transplant camp. 

 And she is off.

Hunter's basketball camp.

Smoring RMH Style

I won't keep you in suspense, Sierra's biopsy this week was another 1A.  As close to zero as you can get.  She had her last IV infusion of IVIG.  This is to ensure that all antibodies are gone that may attack the heart.  It is a LONG 13 hour infusion.  We should get her results back by next week, if they are negative,  she will not have to do anymore IVIG.  We look forward to that.  This morning we had clinic with the doctors.  There was really nothing to report.  She is looking great, eating great and all her labs and vitals seem stable.  They could very well let us go at her 2 month mark which would be the 17th of August.

Enough of a boring report, on to what we have been up to.  The kids are missing home and especially the fun summer stuff we get to do.  In our yard at home we have a fire pit.  At LEAST once every summer, we have a hot dog roast and smores.  So, Sierra and I put our creative juices together (okay Pinterest) and found a way to have smores.  Behind the RMH is a big rope swing, which we have posted pictures of before.  The kids wanted to go and hang out down there.  So, we thought it the perfect opportunity to have smores in a riverbed covered in rocks.  Knowing it was probably illegal to have a fire (with the draught and how dry everything is), we found some flammable cans that give a low flame for 4 1/2 hours.  We bought those, some shish-ka-bob sticks  and all the essentials for smores.  After dinner Tuesday, we went to the rope swing and built our "fire."  It was really fun.  It wasn't home, but it will probably be one of our most memorable moments here.

Lindsey has transplant camp next week.  She is very nervous for it.  She hasn't been that far away from home, not knowing anyone, for that amount of time.  I am sure she will have a friend before the bus ride to the camp is over.  I don't think it is in her to stay quiet for a whole hour and a half.  Hunter has a basketball camp here, that will be good for him. Megan has a volleyball camp in Seaside.  Sierra, Gage and I will hang out with Sierra's various activities throughout the week ( clinic, physical therapy and psych).  It will be good to have a busy week for all of us.  Jason and Megan will come down on Saturday the 25th. It will be sooooo good to all be together again.  After Gages appointment on the 28th, Jason will take the younger kids home and Sierra and I will finish out her wait here. Hopefully we will follow behind them a couple weeks later.

Our friend Alex came and joined us. 

Extra rope had been added to the rope swing.  The person also added rocks to help weigh it down to make it easier to toss up to the person waiting for the rope.  Unfortunately, Hunter found out that it hurts if you miss the rope, the rocks can hit you in the face. 

Sierra had her turn on the rope swing as well. 

The younger kids and I walked to the post office yesterday.  While we were coming back, we found a really yummy bakery.  Unfortunately at the bottom of the cup Lindsey is eating, there was a mocha flavored pudding.  She didn't like it that much.  

Tooth Fairy Found Us

To Gage's great satisfaction, the tooth fairy found us.  Sodas are 25 scents here at the RMH.  He is always wanting to buy them.  I told him he had his own quarter now and he could save it or use it to buy a soda.  He was very excited that he could use his quarter from the tooth fairy to buy his own soda.  Friday we were eating our dinner outside, and Gage comes out with a soda from the machine.  He is grinning from ear to ear.  I figured he must have used his tooth fairy money.  Low and behold to my surprise,  I was counting up his tooth fairy money and there was still a bright shiny quarter in there.  He had gotten his quarter out of my purse.  What a little sneaker. Fortunately for him he had soda two nights in a row with his dinner.  He used his quarter the following night.

Friday Sierra had clinic with the transplant team.  This is just a check in with the doctors.  There was really nothing to report.  They adjusted some medications, but that was about it.  We asked what the earliest they would let us go home, if she continued to do so well, they told us 2 months post transplant.  It is hard to believe she is at her month mark this week.  She is just doing so amazing.  We decided that another week here would be fine.  Her driving skills have GREATLY improved driving around here in California.  Her driving test should be a breeze by the time she gets home.

Saturday we got to spend the day with our dear friends, the Thornton's. We met them at Half Moon Bay.  It was absolutely gorgeous over there.  Usually it is gray, windy and chilly.  But, Saturday we couldn't have asked for better weather. It was sunny, with a light breeze and perfect for playing in the sand and enjoying some sun and awesome company.  Ben received his heart transplant the same day as Sierra in 2006.  He is doing great as far as his heart is concerned.  He is at 6 month biopsies and minimal medications.  He looks and acts great.  He was on the Berlin for 52 days, I believe (?).  He was 4 at the time. Somewhere between being on the Berlin and the transplant something happened near his spinal cord that left him in a wheel chair.  He is an amazing kid and has certainly not let this stop him.  He plays wheelchair basketball and is really good at it.  We get to go and see one of his tournaments in August.  We are really excited to see him play. We love this family so much and it was great to spend the day with them.  WE REALLY NEEDED THE OUTING!!

Saturday evening our friend Angie was released to go home.  So, she left and went back to Idaho Falls.  Yesterday morning our friends the Blanchard's headed home back to Seattle.  We will miss these families.  We have made some fun memories with them, but are so glad they get to be back at home.

This week Sierra will have her last weekly biopsy, with the 13 hour IVIG infusion to follow.  We get to see Jason and Megan in a couple weeks and are really excited to see them.

Gage with his tooth fairy money. 

Too much fun tuckered them right out! 

Ty Blanchard with the kids. 

Cute Samuel who is doing great and Marcus on the left.

All the Blanchard clan but Ty and Mark (the dad).