Tuesday, July 25, 2017

Cardio Update 2017

Cardio visit this year was June 30th and this mama is a month behind on the update. 

We are happy to report that our appointment went smoothly. We started out with labs this time, which never happened but this also means that we had the blood drawn first.  We (Jasiu) was  quite a bit concerned and did not like it at all, however it allowed us to get lab results right after our appointment.  Well getting blood drawn is never fun  but Jasiu did awesome for a 6 year old. He shed a few tears, but cheered up as soon as we left the lab.  He had fun telling everyone he is going to LEGOLAND soon (October hopefully) but to him it can't come soon enough.  After a quick blood draw and a lollypop, we were off to echo lab.

There we briefly saw our Fontan buddy Eli, but because of patient privacy, etc, we could not talk only in the waiting room but then we were whisked away and didn't get to talk much.  Eli is doing awesome as well.

We had our height and weight measured weight 23.2kg which is 51.04 pounds   and 113 cm / 44.4 inches tall ( Still not tall enough for the pool waterslide :(  ) Oxygen saturation was great near 100% and EKG was good too.   Echo was wonderful, we had our old buddy do our echo, he has worked with us since Jasiu was a baby, he remembers the struggles and lengths we went through to get a good echo, and this time as usual, Jasiu laid down, turned on his tv show and only complained once because he was uncomfortable, usually when they look though the jugular angle, from top of neck down at the heart, requires an arched back and head tilted back (kind of like looking at the TV upside down.)

Once our echo was done and Dr. H. read it, he came in to see us.  When Jasiu saw him, he gave him the biggest bearhug I have seen him give someone who he barely sees anymore.  It literally brought tears to my eyes.  We talked about endurance, school and next steps, and we were explained that right now we are "cruising".  I was told we don't see much of any issues until teen years, which of course we hope to never see, but for now to keep doing what we are doing and enjoy life.  We will do just that.  We sported a holter monitor for 24 hours (Friday all day and through Saturday, until we got to Michigan for the 4th of July weekend).  Jasiu, though he DID NOT LIKE having it on, did not complain and went on his merry way.  Results came in just last week, all normal.

I did explain to Dr. H. that we had a slight mix-up in medicine late May, where Jasiu was getting 3x the Enalapril dose he was prescribed for 5 days... This mix-up was caused because I did not pack the 7 day medicine dispenser and Joe thought he was supposed to get full tablet of  Enalapril and aspirin. When this happened we noticed a huge increase in Jasiu's night time cough. Well turns out that he outgrew that dose anyways so it wasn't that  bad for him as we thought.   I'm not sure if related, but we were switched to Lipril.  So far so good with the new med, and no cutting required.   It has a longer half in the body so stays effective longer.

After our appointment we went as usual to Target, to reward Jasiu for all of his cooperation, of course Pokémon was the reward, because God only knows we don't need any more Lego's.

We had a great 4th of July weekend in Michigan, berry picking, beaching, shopping and eating and finally blueberry picking and finished off the holiday at a great BBQ  .

We are off to enjoy what is the rest of our summer vacation and off to 1st grade we are.

Here is a few pics from May (Dominik's first birthday session). All the kids are growing up so quickly.

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