Monday, February 09, 2015

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'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: