The Latest...

Since the last time I posted a lot has changed with Josh, and a lot has stayed the same.  As far as his heart goes everything has, for the most part, remained the same. In June however, one night, in the middle of the night, he woke up coughing. He came into my bedroom, coughed some more and spit something out into a bowl on the nightstand.  I asked what that was - only being half awake, and he said he didn't know, but he had coughed something up. I told myself to check it out in the morning, knowing that he's at risk for a condition called Plastic Bronchitis, a disease that causes a kid like Josh to form casts in the airways of his lungs, which he would cough out.

When I woke up the next morning I checked it out.  I knew right away that this was a "cast" which I had been warned about years prior.  With Hypoplastic Left Heart Syndrome there are countless side effects that can present themselves over the course of time.  This one, which had been discussed when he was probably 3 years old stayed on my radar. That's because I was told there's no cure, and the mortality rate with Plastic Bronchitis wasn't pretty. 

After notifying his cardiologist our calendar filled up rapidly with appointments both at kaiser and Stanford. The pulmonologist at Kaiser hadn't had any prior exposure to Plastic Bronchitis and she promptly sent us to the specialists at Stanford and ordered a bronchoscopy.  The dr's at Stanford seemed incredibly fascinated to see a kid with Plastic Bronchitis. It's quite a rare condition.  Their feeling was, at this point, the best thing is for Josh to continue to be the very active kid that he's always been. Keeping things moving in the lungs through exercise should prove to be helpful. Unfortunately, there is no treatment nor management plan that experts agree upon to be successful. The goal is to keep the casts to a minimum. Lucky for us he's old enough that he can handle these casts better than he would if he were a baby. Then there is a serious risk of choking. Because Josh is older and stronger, the risk of his choking on a cast is lower.  Casts are formed when there is a leak in the lymphatic system. The lymph fluid leaks into the airway, and hardens forming casts, which can be quite large. 

In addition to being followed by a new team, they added a breathing treatment upped a few meds, and decided they want another cath.  As we understand, this disease is another symptom of heart failure. And quite serious at that. 

The first few weeks after learning about his PB were pretty rough for me emotionally.  As a little more time has passed I've done as I've always done, I take a look at Josh, his high quality of life and I just am so grateful he's living a good life. 

So now on to some of the fun stuff....

He finished out 3rd grade and he did a really great job! He grew so much a a student and his attitude about school really improved. It's not as if he had a bad attitude, it was more that he had a really low self esteem when it came to academics and viewed himself as incapable. Somewhere along the line that changed and he began taking responsibility and became mush more independent than he had been.  It was nice to see him finish the year on a positive note after struggling early on in the year. 

Since last posting Josh had another Little League baseball season come and go. He had his best season yet. He played in the minors division this year which meant he was one of the younger kids, but it was definitely the right fit for him. 

He played on the Red Sox and they had a very successful season. He played second base again this year and he was the lead off hitter. In the, end they ended up winning the league title which was such a huge deal for baseball loving Josh! Baseball is his world. I think being a part of a baseball team with coaches who really nurture him has had more of an impact on his well being than anything else I can remember, including therapy. 

His Red Sox coach also coaches a tournament team and Josh has dreamt of playing tournament baseball. When the season came around Josh soo badly wanted to play so he built up his courage and talked with his coach about joining the well established team. His coach worked it out so Josh had a spot on playing in two of the tournaments and substituting as needed.  

Lucky for Josh this means he's still playing baseball through the summer. 

Knowing of Josh's love of baseball, last week the heart team at Kaiser invited Josh to a Giants game. He and his brother and sisters were invited into the dugout and got to see several of the players up close and got to meet pitcher, George Kontos! It was such an incredible experience for them.  

As for the rest of our summer, there's more baseball to be played and he needs a cath that hasn't yet been scheduled.  Josh doesn't mind that he has an upcoming cath, I actually feel like he's looking forward to it. 

I can hardly believe in less than 2 months Josh will be turning 10 years old.  I will never forget at his diagnosis when we were shown a study that lead us to believe he wouldn't make it to his 5th birthday. Every day we are so fortunate to have him in our lives. His 10th birthday will certainly be one of the more special days. I still don't know what we'll do to celebrate but I hope to make it a very special day! 

Results

Josh's cath is done, now we can breath a sigh of relief. Comparing his current pressures to his previous cath they found the results were nearly unchanged. Actually, the resting value has slightly improved this time. What's more, his pump is functioning just fine. This is probably the best news we received because the pump's function has been something of a worry for a couple of years now. 

While his pressures aren't great, he has adapted well to the slightly high pressures and his doctors are pleased to see they aren't rising. 

Overall, Dr. Peng (his cath doc) said she is pretty happy with everything she saw.

We also discussed the results with Dr. Kaufman. She is his primary cardiologist at Stanford and the driving force behind his treatment plan.  We discussed the plan moving forward based off today's results. In short, she thinks we need to "keep doing what we're doing."  At this point neither of us feel compelled to list Josh for transplant.

This is really what we aim for with his treatment plan, safely buying as much time as we can before transplant. 

We really feel good about the results today. Last time we were a little disheartened by his numbers, but this time, armed with the knowledge they aren't declining we are pleased. 

Josh was such a trooper through the whole process. His buddy Owen, who is an old pro when it comes to heart procedures, had given him a pep talk the day before which helped settle some nerves. 

Josh didn't need to be intubated during surgery so I feel like we were pretty lucky in that regard. He only needed to lay flat in recovery for 4 hours which was wonderful compared to the typical 6 hours. He woke up really groggy and it took him so much effort to mutter his first few words. He only had a tiny voice and closed eyes as he worked them out. Those whispers I eventually deciphered to be "Xbox" and "jalapeño Cheetos".  When he's in these situations he knows he can get just about anything he wants. Ha!

Unfortunately for Josh he did so well during the procedure he didn't get to recover in the bed they reserved for him in the CVICU. He stayed on the recovery floor, which lacks some of the perks of ICU that he's accustom to. 

But regardless, he had a great nurse and the stay was relatively short lived. 

He bounced back pretty fast as soon as he was back on his own two feet, he was darting all over the place making me nervous. I can tell the hardest part of recovery will be keeping him from playing harder than he should. 

I am so grateful that's my biggest worry tonight.

I'm really feeling thankful for the positive report and that he's been in good spirits. Thanks to everyone who has been there for us, who

has been thinking of us, praying for us, reached out with encouragement, visited, helped with the kids etc, etc. We truly feel loved and we appreciate it all immensely!

Upcoming Catheterization

This post has been a long time coming. I've slipped into bad habits and sort of let the blog go. I do intend to keep updating, but with Instagram and Facebook always at the finger tips I find those platforms to be the quick (lazy) way for me to pass along information.

A lot has happened since my last update. Josh is a big third grader now, and he's at a new school. The school is a really good fit for him and he transitioned almost seamlessly. That's not to say life as a third grader is glorious because it's proven to be quite rigorous, and a bit overwhelming. But he's getting through and I can see he's really growing as a student. Of course, we are very happy for that!

On the medical front, everything has been stable. I hesitate to type anything too optimistic because we could have the rug swiftly pulled from beneath us later this week.  Josh will have another heart catheterization on Thursday.  His last cath was +2 years ago and they weren't too thrilled with his pressures at that point. The purpose of Josh's caths are to determine if Josh is ready to be listed for transplant. We personally weren't ready to list him for transplant 2 years ago because his quality of life seemed too high to list him, though the team at Stanford felt he was certainly a candidate. If I'm honest, I hope for improvement with the results this week, but I don't expect it. I think best case scenario his pressures won't have gotten any worse.

On my end (this is not scientific or backed by medical findings), I think he's doing better than he has in years. He rarely vomits anymore & when he does it's generally anxiety induced.  He's finally growing a bit and he's very active.  There was a time when he was vomiting up to 3x a day, and for years his growth practically plateaued.  So I'm definitely very much hoping to hear good news on Thursday, but the past 9 years won't allow me to put too many eggs in that basket.

Josh has handled himself pretty well knowing he has this surgery on the horizon.  He's definitely been a bit more anxious, and it comes out in unexpected ways at times, but overall he's hanging in there.  I'm hoping we can get his therapist to stop by and talk with him either before or after the procedure.  He began seeing a psychologist a couple years back and has seen her on and off depending on how he's doing emotionally.  It's been helpful to him and I'm really happy we have her as a resource.

I'll do my best to give an update on the blog, more than the 1 or 2 sentences I'll likely share on Instagram and Facebook Thursday evening. However, it may not happen until a few days after the cath.  Thanks to everyone who still checks for updates, and shares in our love for Josh. I'm always blown away by the love and support we've felt over the years. ♡

The latest...

So much that's happened since I last posted, thankfully, there's nothing negative to report, just a general update of the past 9 months. How terrible of me to have let 9 months pass without making a single update to his blog. But in my defense I taught full-time 2/3 of the school year. So at least there's a good reason for me to have gone MIA.

Josh is nearing the end of second grade. Overall, it's been a much better experience than first grade had been.  I realize school will always be a real challenge for Josh. Part of me wants to just check-out of those worries. That may sound awful but If I'm totally honest, I want his childhood to be fully of joy, new experiences, learning, growing. But school these days is so stressful and highly demanding. I know that's all a part of growing up, but for Josh, growing up already includes more stress than any child should have to bear. Maybe this is just end of the school year angst talking. We are really ready for summer break (if that isn't clear)!

In other news, Josh has been such a stud on the baseball diamond again this season. I'm so proud of him. He's one of those kids who is always giving 110%. He plays the whole darn field, makes so many incredible plays, he's just a boss out there. Baseball brings out the best in him and he has another great coach this season who really helps him flourish. He's has great sportsmanship, he's a leader, he's a stand out - all the way around.  I love that he goes out there, gives it his all and no one knows about his heart, he's just another kid.
(Disclaimer, yes - his coach knows, however spectators and teammates often don't know.)

    

Here's the latest heart update: As it stands right now, Josh is still a candidate for transplant, but for the time being his symptoms that had been very concerning before, haven't been an issue lately. So the plan remains the same with the heart failure team at Stanford...keep watching closely.

Also worthy of posting, last week Jon got his hands on some Warriors tickets and took Josh to a playoff game! It was a dream come true for Josh. I was demanding pictures from Jon the whole time because I knew how much the game meant to Josh. This picture right here says it all.

So there you have it...no life altering news to share, but that's a good thing. We will be meeting with Endocrinology again this week and we'll see where what their thoughts are about Joshua's growth. He's still a just a little guy and hasn't had any significant growth for a few years now.  Maybe I'll have some news to post on that front soon. Also on the horizon, we'll be going to Camp Taylor again this year! Cannot wait for that fun!!

That's all for now!

Meeting Kap

Summer is nearly over and I can't help but feel like it's ending way too soon. I had so many plans that we didn't even get to. But we had a lot of fun; we swam a lot, went to Camp Taylor, to Portland and Seattle, we hiked, spent a ridiculous amount of time at the beach. By all accounts it was a great summer, but it just flew by.
We were able to put Josh's heart somewhat on hold this summer, meaning no major appointments or tests. Just a couple blood draws and phone calls did the trick.

People ask me regularly how Josh's doing and often the answer is 'great!', but there are always those random days that make me wonder.  In general, he's is doing well but he's struggles with fluid retention which has been a reoccurring theme over the past 4+ years.  Fluid retention is really a nuisance, it is very hard on his liver and backs his whole system up. In the past he's wound up in the hospital to help him over the fluid hump, but this summer we've been tweaking his meds here and there from home (following dr's orders of course).  Hopefully we'll get it right at home so we can avoid a hospital stay.

But on to more exciting stuff...
Over the summer our family spent a long 4th of July weekend at Camp Taylor and made many wonderful friends and memories.  It was such an amazing experience for Josh and the rest of us. I felt it healed wounds we didn't know existed. Our mentor, Kenny, was a perfect match for our family and we've stayed in touch with him regularly since camp. What a wonderful example he is to Joshua.

The folks at Camp Taylor were in touch with us last week and asked us if Joshua would be interested in attending a 49ers practice then meet Colin Kaepernick!!
Anyone who has met Josh (or has seen him, or has seen a picture of him) knows that Josh is a faithful 49ers fan and a huge Kaepernick fan!

So we jumped at the chance to make his dream come true.
You never know how these things will go. It could be Colin addresses the crowd with a "Hello, thanks for coming", or he could just nod at them as he runs into the locker room, etc.  I played it down a bit so he wouldn't be disappointed.

Well, turns out he was anything but disappointed! Colin greeted Josh by name (he had a name tag), he talked to him like a buddy. They shared a nice conversation, all while looking him in the eye and calling him Josh. He truly made Josh feel so special. My heart is so full knowing that his hero isn't just a football star, he's a caring, generous person who took the time to make difference.  I love him even more now!

Josh wrote Colin a little letter. He thanked him for having him out to practice, invited him to his birthday party & asked for his phone number. Ha! Kap was so nice to his little fan.

Everyone involved in this special evening was phenomenal; from the staff at Camp Taylor, to the players, the coaches and the Kaepernick family. All terrific people who are making a meaningful difference.

I don't have fame or fortune but I sure hope I can somehow give back in a powerful way, some day.
For all of the difficulties and hardships he's faced, this really does soften things and it brings so much joy!
I know this will never be read by anyone involved but I'm throwing my gratitude into the universe, saying thank you! Thank you!

May

A few weeks back I took Josh to see his Kaiser cardiologist in the city.  He sees her every other month and he's seen at Stanford  every other month - so he's seen monthly between the two.  When we went to Kaiser his doctor showed me his growth chart and pointed out that in a full year Josh hadn't gained any weight.  They call that failure to thrive. She explained that more than just his body is effected by poor growth, his brain development can also be effected by insufficient calories.  Calories have never really been the problem with Josh. He's willing to eat & really never stops eating all day. But that darn heart of his is working overtime and takes so much energy to function.  Of course the discussion lead to transplant because that's generally the next step in the process when a child (with a very sick heart) has completely stopped growing.

This information didn't sit very well with me. I was really worried and anxious to visit Stanford last week, but it went surprisingly well.  According to their scale he's gained nearly 3lbs over he year (which is not great), and they felt like that was acceptable.  At Stanford they base much of their decision regarding transplant on my opinion of his quality of life and activity level.  

I spend 4 days a week at Josh's baseball field watching him run and play alongside healthy active boys. I don't think anyone would pick Josh out of the crowd as a kid who has a failing heart, I just don't.  Honestly, if he didn't have those 8 hours on the field that I get to see him being extremely active I might question his well being.   His doctors were very pleased and surprised to hear that he's able to keep up.  They continue to encourage us to focus on high calorie nutrition but other than that they are happy with the way things are going.  

Josh has also started going to therapy and we are very hopeful his anxiety will improve.  He's really struggled the past few months with anxiety and has voiced worries about transplant.  Transplant is a new-ish idea for him and he goes in and out of phases when he's quite fearful. 

When he went to the ER about a month ago he was wheeled through the hallways to get several tests.  As many of you know,  ER hallways are lined with beds of people who are sick.  I don't mean to be insensitive in the least, but it's a very scary sight for a little guy.  He saw people that night who looked like they were really suffering (and or possibly dead) and it terrified him.  He's mentioned he doesn't want to go back to the hospital because he's scared of those people.

I think it has really contributed to his anxiety, among other things & I'm hopefully his therapist will be able to ease his mind. 

I'm really grateful he's had baseball this season because it's a time when he has no worries.  He's able to go out there and just be a kid, it's been a huge blessing.  He's got amazing coaches who treat him just like all the other boys.  He's not handled with 'kid gloves' they treat him and all the boys like men (seriously!).  I think signing him up for baseball was the best decision I could have made for him. 

He's always been really into baseball since he was just a little(r) guy.  His love extends beyond the little league field.  He's naturally been a fan of the Giants forever, but given his experience playing on a team of his own the flames of his passion have been fanned.  If he's not playing baseball he's watching Giants highlights.  It's the same 2 videos he watches over and over and over. I think the whole family falls asleep with the songs from these videos playing on repeat in our minds.  He's a passionate kid.

I took my kids to a Giants game a few weeks back and we had such a good time.  Josh has been to a few River Cats games in Sacramento which he loved, but he'd never seen his Giants in person.  He turned to me, sitting at nearly the top row of AT&T Park, and said with all his soul, "Mom, this is a dream come true." It was perfect.  We are headed back to watch another game this weekend.  It's Little League Day at AT&T Park, so it's bound to be a special day!

*I have no idea why their are links to adds in this post, my apologies*

    

1st Grade

At the beginning of the school year I put in a request to get a little extra help with Josh's school work through a tutoring service. It took quite some time to get the ball rolling on it, but last week he finally had his first session.
We've felt very lucky through all of our experiences with Josh that there haven't been any developmental delays. However, first grade has been a difficult on for Josh. There seems to be some sort of disconnect that we haven't experienced in the past.  He did quite well with Mrs. Marinez in kindergarten & she assured us he's a regular old kid, nothing to worry about with him (she's been teaching more than 40 years, so I trust her judgment).  But this year just hasn't been the same and I can't pin point the problem.  I spend a lot of time with him each evening reading, helping him understand his homework, but even with that I feel like he's having some trouble retaining what is being taught.  I also notice he has a hard time maintaining focus. First grade is much more rigorous, and it's just been hard to adapt.
Thankfully, he's really enjoyed his first two sessions with his tutor.  She's been very encouraging and Josh responds well to her personality.  I'm really hoping that this extra help will allow him to catch up to where his teacher feels he should be & most importantly to build confidence in his ability to learn.
In addition, I have been have recently reached out to Stanford's department that advocates for their patients with educational needs.  I look forward to any advice/help they can provide to give him a little boost as well.
I know many of you who read this blog have kids similar to Josh so if you have any advice I'd love to hear it!

Lastly, here are a few pictures from opening day & Josh's first game...

(I can't stand how cute these little boys are in their uniforms!!)

Okay, one last thing...A dad from Josh's team approached me and mentioned he heard Josh may have some sort of heart issue.  I began to tell him a little about it and he asked "Is he a hypoplast?"...immediately I knew this guy was familiar with the heart on a medical level (hypoplast=doctor talk).  So he goes on to tell me that he was Dr. Azakie's perfusionist (the guy who hooks the patients up to the heart-lung bypass machine) during open-heart procedures.  We realized together that he was in the OR for all of Josh's major surgeries. How crazy is that? He couldn't believe that Josh was post-Fontan. He said, "You just don't see kids running around like this post-Fontan!"  He said he was going to call Dr. Azakie to tell him because he could hardly believe it.  That's how we feel too, Josh is a special kid. 

Spring Training

I'm happy to post about something unrelated to the heart.  If you've even glanced at this blog you likely know that Josh is a sports fanatic.  He spends every second of his day (outside of the classroom) playing sports.  Or if he has down time he's on YouTube watching highlight reels.  He's so knowledgeable it's mind blowing.  Anyhow, a couple months ago we signed Josh up for Little League hoping he'd be able to keep up & play with the team that consists of 1st-3rd graders.   He's just a first grader and a very tiny one at that.  But he's got great coordination and he's naturally very good at sports so we *hoped* he'd be able to play at this level without any problems.

So far it's been really good.  He's had maybe 6 practices and a scrimmage and I tell you he's really impressed us all.  His fielding skills are pretty incredible.  His coaches (who are wonderful!) have him playing mostly 2nd base.  He really enjoys it and he's been practicing a lot outside of team practice.  He really studies the position and knows just what to do when the ball is hit to him.
He's so focused and determined, it's so much fun to watch.
Because I never want to forget I wanted to write down some of the highlights from his first scrimmage.  It just so happened that he was playing his best buddy, Darius' team.  That was a fun surprise!  Well Darius isn't really a 'boy', he's a big, strong athletic guy, the kind with more talent than any one person should be blessed with! Darius and Josh have been best buddies since the first day of Kindergarten.  I know that Darius is looking out for Josh at school when I'm not there.  These boys are really tight.  Anyway, Darius was up at bat and his swing makes your heart race, it's not a little league swing, I'll tell you that! I felt a little nervous for all of our boys because when Darius connects that ball flies and fast! This particular at-bat when Darius connected with the ball it went straight to Josh who was playing second, he caught that ball on a bounce and threw it to first base before I could blink! It was a beautiful play & everyone was shouting to Josh telling him what an awesome play he made.  That catch was incredible.  It was really fun to watch! I don't think Josh thought much of it other than being excited his buddy hit it to him. :)

Another highlight (& this may be the highlight of Josh's life) was when Josh hit an in-park home run! He connected solidly with the ball and made it easily to first. But the ball was over thrown to first & he was coached to run to second & then third and then home! It was so cute watching him. At every base he threw his hand up and celebrated.  Jon told him he needs to save the celebrating till after he scores and that "a tip of the hat will do", ha!
Anyway, we are really enjoying this season with Josh feeling well enough to tear it up on the field.  We don't know how long it will last, but it sure is fun to watch!

February Update

I really need to be better about updating this blog.  There is so much more to Josh than this silly heart defect, yet it seems to be all I take the time to write about.
Josh was seen at Stanford again today.  At last report we (along with the doctors), decided that we weren't quite ready to list Josh for heart transplant.

Josh was scheduled to be seen next week but his appointment was moved up a week because he'd become symptomatic.  For whatever reason Josh had been waking up at the crack of dawn and throwing up.  This went on for several weeks which prompted his appointment to be moved.
The timing of these episodes seemed really curious to me since his other episodes have always been after eating, or after taking his meds.  I thought to myself one morning as I was in the bathroom with him that my stomach didn't feel so good either.  That's when it hit me that perhaps Josh was confusing hunger pains for a sick tummy.  Poor kid has had such a hard time with his tummy over the past year or so, suffering from terrible vomiting spells.  Anyway, it's become the norm that he throws up for a multitude of reasons, so in my mind I thought maybe he was experiencing these early morning episodes due to hunger pains, not his heart.  Consequently, I have been putting a baggy of Goldfish next to his bed at night and when he wakes up in the morning and his tummy hurts he eats a few crackers & so far so good...it's worked (no more morning sickness;)!
Now obviously this little trick doesn't work for all of his episodes, but it's an incredible relief to realize that it wasn't necessarily his heart this time.
With that said, Dr. Kaufman agreed that these episodes likely weren't heart related since nothing else has declined for Josh.  His activity level is still high, he's still able to do everything he enjoys doing.

In addition, Josh has grown a bit!  At last check up he had lost weight which was very concerning.  This time he gained 2lbs...2lbs!  He also grew a half an inch which is awesome.  Dr. Kaufman said that the line on his growth chart actually moved diagonally instead of horizontally. Great news.
Finally, she told us that there was nothing new that's concerning on his echo.  In fact, there was some slight improvement with his leaky tricuspid valve, and she couldn't detect a murmur when she preformed her physical exam.
Overall, we walked away with a lot of happy news.  It feels like it's been a while since we've gotten good news as opposed to not-bad-news or flat out bad news, so this was unexpected and wonderful.
The piece of not-so-good news we received was that Josh's antibodies are pretty high.  So this has some implications when it comes to transplant.  There will likely be regular infusion treatments needed prior to transplant, but we'll cross that bridge when we get to it.
We'll continue to been seen every 3 months at Stanford and every other month at Kaiser because unfortunately Josh isn't in the clear, nor will he be.  But for the time being we are really happy to have a few more months enjoying life as we know it.
As always we are really grateful for all of the love and support we constantly feel from family and friends.  I don't know what I'd do without that support, and especially the help I always get from my dear friend Betty who is always there for me no matter her personal circumstances.  Though I'm hundreds of miles from my nearest sister, she makes me feel like I have a sister down the street.  I'll always be in her debt & consider myself very fortunate to have her.

In other Josh news, here are a few other fun pictures from the past couple months: