Friday, April 12, 2013

April Update

Jon and I have been feeling like something is a little 'off' with Josh the past several days.   I called the cardiologist and they decided we should bring him in to make sure things look okay. He had an appointment yesterday and it went surprisingly well. His echo looked pretty good, which was quite a relief.

It was just about a year ago, after he had a procedure to close his fenestration, that a doctor told us his heart was in such poor shape that we should "...just enjoy the time you have with him."  That was pretty rough (to put it lightly), but thankfully this past year he has slowly improved. Of course he's had his set backs, as he always will, but we are incredibly grateful that he's doing alright. 

The echo looked good, he's not retaining fluid in his lungs, on his heart, or his legs, face, etc.  His sats were in the mid 90's which is good for Josh.  He was seen last month so he hasn't made much progress on the growth chart, but he's IS on the chart now for weight, 5th percentile! Still not on the chart for his height.
After his echo, the next stop for Josh was the pacemaker clinic to get an idea how often his pacer is firing.  Apparently, he is using his pacemaker a little more that 50% of the time, but during his appointments it never seems to fire, so Dr. Rivera decided to put him on a Holter monitor for 24 hours to get an idea when it's being triggered. They think his heart rate may drop low while he sleeps causing it to fire through the night.  We'll know the results within the next week or so. 

Overall, Dr. Rivera was pretty pleased with what he saw, but decided that some blood work should be done because it's very possible that his electrolyte levels are off due to his diuretics.  So the final stop of the day was to the lab to have some blood drawn & then we were off!

Still waiting to hear back about the blood work, and hoping that maybe we'll find out why Josh hasn't been feeling too great.  But, again, we are relieved to know that there are no major issues, just possibly some small tweaking of meds.

In other news, Josh was asked by the Make-A-Wish foundation to join a handful of other wish kids at the River Cats game April 20th to sing, "Take Me Out to the Ball Game", during the seventh inning stretch.  He couldn't be more excited and has been practicing every day for the big event.  We can't wait to watch!

One last thing...Make-A-Wish is holding their annual "Walk for Wishes" event May 18th at Raley Field. We are excited to participate this year & can tell you it's a very worthy cause!! If you are looking for something fun to do with your family, join us! Click here for more information. :)

Friday, April 05, 2013

these boys

I normally have some sort of health update to share, but not today.  I mostly just wanted to share this gem of a picture my sister took of the boys this past weekend.
Using my best judgement (since I don't have the Dr's word for it) Josh is doing pretty well. He runs and plays all the live long day, he gets into trouble with his little brother, never stops eating & sufficiently makes a mess of the house. Yes, I'd say he does every thing a 5 year old boy should do.
Anyhow,  Josh will go back in and do a full day at the Cardio's office in about 3 weeks and we'll get a good idea how everything looks on the inside (aside from my outward assessment).  Hoping we'll get a good enough report that we won't have to go back so frequently for follow up.  But honestly, visiting Dr. Rivera regularly isn't so bad...I just think getting a 6 month clearance would feel like a huge victory. So we'll be praying for a victory.

Happy spring, everyone!