ECHO day

The word ECHO is now an every day part of our vocabulary. I hate the word, I hate the fear that it instills and I hate the days that mark ECHO on my calendar. Today was one such day. All the way to Sick Kids this morning I talked to Josh about the upcoming ECHO, and he said 'No' a number of times. When I told him 'no one will hurt you' he said (clearly) 'Sick Kids hurts'... my heart sank as I tried to explain that yes, sometimes it hurts to go there, sometimes it hurts to heal, but this time would be different, this time they wouldn't hurt him. After a little conversation he settled and seemed to understand that it was inevitable and he needed to 'man up'. When we got there and they tried to take his shirt off he lost it, showing his scar is not something he wants to do yet, and he fought hard against all the stickers and wires for the ECG and the ECHO. It was less than enjoyable, though if I were honest, it's never enjoyable and yet still better than when they would need to sedate him for the ECHO.

The results it would seem are both a blessings another huge question mark. The blessings, the valves seem to be holding well, there is no sign of rejection! This is good news! There will be no need for a shunt, this too is good news! The not so great news was that there is a narrowing in the inflow/outflow (of this I am still confirming details with the doctor) tract, which is not good. Though he is not 'acute' she worded it in such a way that made it clear that it would at some point become acute.

This is a new problem, I have no research for it, I don't know what it all means... I can only tell you what she told me which wasn't much this time as it wasn't a proper clinic appointment but rather a quick 'favor' so that I didn't have to wait for the results. I am sure an email is forthcoming.

When we came out of surgery in September the doctor said '6 months to 7 years'... it's been three months, and by the time of the next ECHO appointment it will have been 9 months. This is something to be pleased about. The longer we have between surgeries the better for Josh, and for us.

So for now, we have to carefully monitor, make sure he isn't tiring to quickly during exercise and pray to God that it doesn't become even narrower!

(as an update to this post - the narrowing is happening in the inflow tract to the right ventricle, we have been given signs to look for to show that it's getting worse and the only way to fix this would be to finally replace that Tricuspid Valve...)