Mason had a medication adjustment and echocardiogram today.
First decent appointment following an echo that we've had!
Masons heart hasn't changed much since we got home in October which is somewhat a good thing, it hasn't gotten worse! Actually there are some slight improvements. His right side did show improvement basically to where it should be pumping. His left side hasn't shown but MAYBE tiny improvement, if that. The valve leak looked moderate still. But it's not so much the echos as it is how Mason is doing physically. Mason weighed 12.2lbs and was 25 3/4in long. His weight is not ideal but we knew that months ago. He's on his own curve which is good. They'd like him to get acclimated to his medication at the highest doses until we try to start playing catchup. Of course he's way below the percentage line but he decided he makes his own charts.
We met with Speech therapy and occupational/physical therapy today. As far as his "speech" he doesn't seem too far behind. He isn't ready for foods yet. But would like us to get as many different textures teething toys and maybe try some teething biscuits (not wafers). As for his motor skills, he should be sitting up somewhat. Which he doesn't do at all. So we will be working on this mainly.
I tried to get the okay to give back the feeding pump, but we still aren't out of the woods there. Fear is that patients with issues like Mason can quickly take a turn back and then NEED the "tube of doom". So they want us to have it readily available. He still has at least 2 more medication increases before we are at the peak allowed. This will be adjusted over the course of the next month. From there we will hopefully have a better idea of what course of action we will be on; switch or transplant. #masonstrong #chdaware #heartwarrior #ltga #transpositionofthegreatarteries #transpositionofthegreatarteriesltype #chdwarrior #chdsucks #chd