He is Out

Gage was able to get out of the hospital yesterday.  We all couldn't be happier.  I was pleasantly surprised.  We had a wonderful nurse practitioner who was questioning everything I was questioning.  Such as, "What are we doing for Gage in the hospital that they couldn't be doing at home." The doctors himmmd and hummmed and decided to check in with him in afternoon rounds, around 4.  Inside my anxiety level was shooting through the roof, as Megan had a game that started at 3:15 and I was already making my plan to pick kids up and get them to Megan's game.  Throw rounds and a discharge in the middle of that, and I couldn't figure out how to pull that off.  

Bambi, our wonderful nurse practitioner, walked in his room at 1:00 and said discharge orders were in and we could leave within the hour.  She wanted to make sure we were out before the kids started getting home from school.  It was all I could do to not hug her and give her a big kiss on her cheek! Our prayers were answered.  We were able to make it to Megans game (all of us) and then lay low the rest of the night.  Gage continually wears his mask.  He is by no means  "over" his influenza.  He has a horrible cough that gets worse at night.  It just makes my ribs ache listening to him cough. He is able to drink (with A LOT of encouragement) and holds it down.  He tolerated his 500 mL of feeds at night without throwing it up, while in the hospital.  However, this morning was not the same story. He ended up vomiting quite a lot of his feeds along with his feeding tube.  So, we are not there yet, but he does act great and normal during the day with "a little" cough.   I am not going to post how the other kids are doing, because I don't want to jinx myself again.  I have gotten a runny nose and cough and get to sport a mask as well.  By no means as bad as Gage.  I am so glad we got the flu shot.  The doctors were expecting it to be a lot worse.  They said probably because of the flu shot it wasn't as bad.  Sierra and Lindsey have both been started on Tamiflu for precautionary measures.  

Jason returns late tomorrow, and we are all very excited for his return.  All should be back to normal by the time he gets here.  Megan won her game and did very well.  She scored 19 of the 59 points.  Thank you for all your prayers and help through this week!

Gage "outside" of the hospital waiting for the shuttle.  I didn't drive over because I wasn't expecting to go home.

Hunter and Gage got some Stanford hats from Bingo the other night at the playroom.  Hunter feels pretty grown up with his hat on.  He is quite the "cool cat."

Gage and I waiting for the shuttle.

Hunter, Lindsey and Gage playing basketball at half time of Megan's game.  You can see the score was tied 25 - 25.  Good game to watch.

Hospitalized with Influenza B

Thank you for the good idea about the food coloring and magic turtle drink.  I may very well try that idea!  Apparently I jinxed myself after my last post.

Gage woke up Monday morning not wanting to go to school.  This is very unusual for him, as he loves school.  His  temperature was 100.6, so I decided to keep him home and lay low.  His low grade fever subsided and he acted a little better as the day went on.  Towards the evening, he was getting the chills and his low grade fever was creeping back.  By 11:30 that night, his temperature was at 102.4.  I gave him his first dose of Tylenol.  It seemed to help, because he slept well for about 4 hours.  He woke up that morning, with a temp of 102.4 again and threw up over a 100 ml of his feeds.  This won him a trip to the ER, with an afternoon admission to 3 West.

 On the LVAD, there is a very fine line of fluid balance.  He has walked this line well balanced for over a month.  Add a fever and an ugly inflenza virus and it throws all his labs and balance into chaos. Mind you, this is a strain of influenza that was not in this years flu vaccine, as we all got the vaccine.  His fevers kept spiking on and off yesterday.  When his fever is low, you can get him to drink.  When it is high, he does what anyone would want to do, sleep. The doctors have given him a lot of fluid to try and stay on top of the dehydration, but his VAD keeps having suction events.  This is where the top of the HeartWare , where the blood gets sucked into the device, presses against the septum of the heart and sucks part of the muscle wall over the top.  Gage has been asymptomatic to any of these events, it just lets the doctors know that he is on the dryer side of where he needs to be.  They also had blood pressure issues with him yesterday and last night.  They couldn't get his blood pressure to come down.  So, they gave him a bunch of blood pressure meds.  It seems to be better today.  Their not sure what made the blood pressure higher. Possibly a faulty cuff.

He will hopefully only have a couple more days here.  Just to get his fluid balanced where they want it and his labs back to a good number. His kidneys have taken a hit with this as well.  Just when we thought our schedule was crazy, throw one of our kids in the hospital and it makes a new definition of crazy.  Jason gets back on Sunday, we will definitely be ready for him to be here.  Thank you to my friends here in California for helping me out with the other kids.  What would I do without you Michelle and Sondra. We will start Lindsey and Sierra on Tamaflu today to make sure they don't get the same thing.  Let's hope it stops with Gage.

Above: Gage in his room 3241 watching a movie.  Below: Gage in the ER watching a movie.  Not minding the lying in bed and watching movies.

Great Weekend

Just a few notes before I get into the last few days.  We have had questions about what testing our family has had done.  We have been genetically tested, no gene has been found yet.  The doctors feel like maybe there is a gene that they just haven't identified yet.  We have been tested for the mitochondrial disorder as well.  That test was negative.  We had our water and soil tested at home, which came back with nothing.  There is a doctor here at Stanford, who is presently testing our genes in a different fashion.  He collected blood samples from our whole family.  He takes those cells and turns them into cardiac cells.  His team watches them grow and sees if they can catch when the genetic mutation is happening.  This is very high tech and will take years before we hear of any results. The doctor has invited Hunter to come work on his team once Hunter comes to Stanford for college (he is very nice).  Hunter still has a few years yet before that will happen.

We survived Friday.  The kids did well and Lindsey made it safely to and from school.  Gage and I learned the importance of making sure we hold pressure for a little longer on his blood draws.  He had labs drawn Friday morning, which he gets weekly. We were early for school, so we sat outside the door and waited.  Gage said, "Mom, I think you better look at my blood draw, it feels really wet."  I took his jacket off, and sure enough, he had blood saturated through his shirt and running down his arm.  I tried to hold pressure on the 2x2 and coban that was on his site.  It was so saturated with blood, the blood just squirted out.  We ran to the bathrooms around the corner and of course they were both full.  To make a long story short, we left a small puddle of blood on the carpet outside of the bathrooms and ended up stripping off his shirt and washing the blood out so he could go to school.  We got the bleeding stopped and was never so happy he had on a really dark colored shirt.

His clinic appointment was uneventful.  We had one of our favorites, Dr. Rosenthal.  He hadn't seen Gage since he discharged him from the hospital on December 20th.  He was VERY pleased with how well Gage looked.  When Gage was in the hospital recovering from his VAD surgery, there were a total of 5 VAD's including him.  Of those 5, he is the only one that hasn't been readmitted for something.  There has been no changes in his medication regimen or fluid balance in 3 weeks.  He is doing great.  They were not concerned with his vomiting and was very pleased with his weight gain.  We asked if he was ready to go to a 1A status yet, but Dr. Rosenthal felt like 3 months after his discharge from the hospital would be the best time.  So, March 20, Gage will go from a status 7 to a status 1A.  This means that he will be able to do more than just accrue time, he will be able to accept an offer when it comes.

We have been asked a couple times from doctors, which device we like better, the HeartWare or the Berlin.  We love he HeartWare as it allows us to be a family outside of the hospital.  When Lindsey was on the Berlin, we always struggled with attending our other children's activities and leaving Lindsey sitting alone in the hospital.  Fighting the guilt that was eating you up inside, knowing she couldn't come. It is so nice that Gage can go everywhere with us. We are so grateful, that our surgeon, Dr. Meata, decided to try him on the HeartWare.  Gage is the smallest they have placed on the device.

Saturday, we were able to go and see our friends the Thorntons.  There are benefits to being in California.  We get to see all our friends that we miss when we are home.  Unfortunately, the visit wasn't as long as we wanted.  Sierra had a big paper due on Monday that she had to finish and there wasn't enough time to do anything big.  So, we made plans for another day.

Jason is in the thick of work at home.  He was able to attend some high school basketball games.  The kids here have another week of school, basketball games/practice, cub scouts and youth group.  We love being busy, as it helps the time go by faster. Hunter has a "hoops" class he does after school on Wednesdays.  He is really enjoying it and loves that the coach mentioned, "he has a lot of potential." He is very competitive like his sister Megan. There is only winning, no losing. Sierra isn't crazy about having her mind stretched so much at school, but she is enjoying the atmosphere of the school and meeting new people.  She has set a goal to meet someone new everyday.  Some days she meets that goal and some days, "she just isn't feelng it."  I am really proud of her for trying so hard. Lindsey has some friends, but is also working on meeting new people.  She was nervous on Friday because they showed our Dateline special in her class.  I think it went well and she said the kids just had a lot of questions for her.  I'm not too worried, she will make friends without any problems. Megan is loving playing basketball for Paly's JV team.  She attended a big game on Saturday, between the JV/Varsity Paly boys and the Pinewood JV/Varsity boys.  This is the same school that Megan's team won on Thursday.  Paly ended up winning both JV/Varsity.  They were both really intense games. Megan has not had a problem finding her social side here.

Gage and Hunter dressing up in Ben's hat and jacket playing in his wheelchair. 

Pictures of Megan during one of her basketball games by a student that works in photography.

We noticed she needs her tongue to play well.  Especially this shot when her tongue started on one side of her mouth then switched to the other as she went up for the shot. Hey, whatever helps! 

Drum Roll Please!! (No, not a heart)

We will start off with the good news.  Lindsey's biopsy results were a ZERO!! Another one for her in the books.  She will have clinic in 3 months then repeat the biopsy in 6 months.  She is very solid in her treatment.  Everything seems to look very good and stable (we could use some of that right now).

Jason left to go back to Oregon today to get some work done and prepare for tax season.  This is going to force us all to step up our game a little.  Sierra will drive her and Megan to early morning seminary at 6:40.  They will then drive back to the RMH and ride their bikes to school, so I have the car if I need it. We only live a mile from their school.  This will not be that difficult for them.  Jason has been riding his bike with Lindsey to school so that she knows what route to take.  Today was the first day that she had to ride home by herself, all the way.  I was nervous for a little bit when she called to ask me what street she was supposed to turn on.  However, she made it home just fine.  I will continue to put Hunter on the bus and be there when he gets off.  I also go with Gage to the hospital school and sit with him there. At least this is our plan for now.  We will see how this goes. As long as no clinics or physical therapy is scheduled in the afternoons or early mornings, all should be well. It will be nice to get enough of a routine down, that it can take the stress off of Jason feeling like he has to be here.  We will miss him, but we also have a mortgage we must pay.

Tonight, Megan had a scrimmage against a private school called Pinewood.  She was really nervous for this game and was sure they would be blown out of the water.  Lets just say, it was a very intense 4th quarter, but we won by 5 points.  Megan ended up making a couple 3 point shots and 3-4 2 point shots. They fell asleep a little bit in the 3rd quarter but made a great come back.  She was really excited. After Megan's game, we went to Hunter's cub scout pack meeting. This is where he presented the cake that he and Jason made.  They did a cake walk at the end and everyone went home with a cake other than the one they brought.  He thought it was great!

Gage has clinic tomorrow.  We'll see how everything looks.  He has thrown up twice today.  Once this morning just after taking his medicine.  Then again this evening when he was taking his medicine.  With this feeding tube sitting in the back of his throat, he tends to gag a little easier, especially when taking his pills.  Once the gag reflex starts, there is no stopping.  Other than that, he has been acting great and appears to be very stable. We will see if the doctors think the same thing tomorrow.

Biopsy, clinic, and physical therapy

Lindsey had a good biopsy this morning.  Her heart pressures are perfect with the rejection results tomorrow.  If all is well, she will go another 6 months before the next biopsy.   Sierra's clinic appointment was also good.  They are discontinuing 3 of her heart meds.  She is still on plenty of meds, so 3 is a good start.

Gage had physical therapy the other day. Stacy took some really funny pictures of Gage doing some 'therapy'.  They came up with a creative way to get Gage to doing some squatting.  Stacy was really cracking up.

Lindsey and I are participating in a study to see if parents can take heart echo pictures. I was trained today. Tomorrow I will take the 'official' pictures for the study.  Lindsey is not crazy about dear ole' Dad running an echo machine, but she is a good sport.

Tonight Hunter and I made a cake for his cub scouts.  The theme is 'Trustworthy', so we did a deer camp cake.  You have to admit, it is pretty awesome!!

Heading home to Oregon tomorrow.  Really going to miss the family, but with tax season on the horizon, it is where I need to be.

Lindsey and Heidi, heading in

 

 Bumped into Mandy and Sandra, her physical therapists from the Good Ole' Days.

 Hunter's AWESOME Deer camp cake.

 So he is a duck (or a chicken),

 Then has to squat to get the eggs. 

Some serious squatting.

Tuesday night

We have a big day tomorrow, Wednesday. Lindsey has biopsy. First one since July of last year.  We would love to have good result there.  Sierra has clinic appointment and blood draw.  After the appointment Sierra and I get trained on how to do echo's.  Yes, that is right.  However this is just a study to see if parents (especially non-nurse parents such as myself) can actually perform an echo.  It will definitely be interesting echoing my 16 year old.  

Kids have school, sports, seminary, the usual, so as soon as the biopsy and clinic appointments are done, it is back to the grind.

Megan had a good game against Mountain View.  She is getting more confident as the season progresses.

Last of all, this morning Lindsey and I had a very wet bike ride to Jordan.   You know your wet when you have water dripping down the small of your back, and beyond.  It was kinda fun to bike together in the warm rain.  No matter where we are at, here or in Oregon, we love the rain.

Gage is hangin' in there.  Main thing we battle is the tummy aches and getting him to drink fluids. It is a constant battle.

That's it for now,

Heading down Bryant

Not many bikes today at Jordan.

Tide Pools

Today we took the kids and Mia over to the ocean at Fitzgerald Reserve to look at the tide pools.  We did thisonce in Oregon and really enjoyed it.  We saw all kinds ocean life, the kids thought it was pretty cool.

Gage did a great job walking around and not dropping ole' Blackwood into the ocean. That would be bad, very bad.  I carried him a bit on the walks and the long stairs ways up from the ocean.  It was good to get him out and doing something.

Other than that we are all good.  Busy rest of the week.  Kids have tests, homework, basketball games, biopsy, clinic appointments, and I head to Oregon for work.  Hang in there Stacy!

We have read and enjoyed every comment sent to us from all over the country.  There are so many good people out there, many have issues similar to ours. Thank you.

After Dateline

Stacy here.   We are humbled by the out pour of support and love from people that watched the show, especially the complete strangers that wanted to reach out and help or share their kind words of love, support, prayers and experiences.  Thank you everyone!! It really means a lot to us.  We don't take that lightly! We are in awe at the workings of Sandy Cummings, the producer of the Dateline show.  She did a great job in behalf of our family.

It was interesting and heart wrenching to watch Gage's reaction to the story.  He has seen the first Dateline episode.  But, for this one, his emotions were very close to the surface.  He was crying right at the beginning when he saw the pictures of Lindsey after her surgery.  He said that he was scared and didn't want to have to get a new heart.  He especially wasn't looking forward to a breathing tube and his chest being cut open again.  He ended up sobbing through the whole thing.  It didn't matter what we said to him.  These last 2 surgeries he had are still very fresh on his mind for him to forget.  I have a feeling he will be ready when the time comes, but not tonight.

The other kids were laughing at all the embarrassing parts and crying through others.  I'm not sure who that family was, but I feel for them.  Certainly our life can't be that traumatic. Again, thank you to all who support us and watched it.  Sandy you did a great job and worked your magic.  It is always fun to see what footage you decide to use and how you put it all together.

Our heart continues to go out to Nicholas' family.  What a special experience that was to meet them.

As our story continues, Jason flies home Thursday for 10 days to get more work done. But before he leaves, Sierra has clinic, Lindsey has biopsy, Gage has clinic, Megan has a basketball game, and the kids all have school.  Hopefully this all goes well.

 Taken during one of the commercial breaks.  We were trying to cheer him up, but it didn't work.

 Took a walk up to the 'Dish' above Stanford. Gage did really well, walked for about 1/2 of it.

Saturday night before Dateline.

For any of you who are following this kind of stuff, there will be a short 2-3 minute teaser on the Today Show on Sunday morning around 8:30 am.  It is a promotional plug for the Dateline show, tomorrow, Sunday night, at 9.  Just thought I pass that along.

Anyway, tonight we had the treat of spending the evening with Sophia and her foster parents Dan and

Judy.  Stacy met Sophia and Judy at the hospital school were Gage goes.  Sophia received a liver transplant back in November 2015, and now lives with Dan and Judy in a beautiful home in Los Altos.  It's quite a story.  Stacy and I were impressed and very humbled by these good people.   Dan is a retired Atari executive so he had a good ole fashion arcade right there in the house.  Kids had a blast playing the arcade style games. The racing game was the biggest hit, along with the 2 cute little toy dogs. Sorry, no PacMan or I would still be there.

Megan had her best game the other night against Los Altos. They won and played well.

Other than that, I guess lets meet up after the Dateline show.

 Game night with Alex

 Scott giving a few pointers after the game.

Thursday report

We are all getting into the groove here in Palo Alto. Gage is doing well with his nightly feeds, dressing changes, fluid intake and other stuff.  Stacy does a good job monitoring all that.

Lindsey and I ride bikes to her school.  Its a good 25 minute bike ride across several busy intersection.  We enjoy the ride, but she is getting close to the point where she wants to do it on her own.  My little girl is growing up.

Megan had a game Tuesday night.  They got beat by Saratoga.  It was good for them.  They play again tomorrow against Los Altos at Gunn.

If you haven't heard, the Dateline show is this Sunday night with a new time 7/6 central, 9 pm Pacific.  So there you go.  Honestly, it is kinda weird to see that stuff. We are just trying to make this all work. Every night we pray how grateful we are that Gage is not in the hospital hooked to the Berlin.  We are able to be together, working, going to school, and participating in school activities here at the RMH. We owe so much to Dr Katz, and the technology available.

Gage is still on the transplant list, but listed as status 7.  This means he is still accruing time as a status 1A (high priority list) but if a heart was available today, he would not accept it.  They still want him even more health and strong before going back on the active list. We are all good with that. Nice to give us a little distance from the last open heart surgery.

Tonight there was group taking photo's here at the RMH.  Attached are some of those pictures. Megan was at practice so Alex had to stand it. It was really fun.