Nine months Post-Glenn & echo results

It's been so long since I've posted anything heart related, I kind of forgot this is an HLHS blog!

 Santi's last open heart surgery (the Glenn) was NINE months ago today! (I can't believe it!) Our main goal after the Glenn was to keep him healthy. No colds, no flu, no cough, no hospital visits. And you know what? We did it! I don't know if it's luck or if it's because we are agoraphobic germaphobes but we managed to keep him healthy amidst a killer cold and flu season. YAY!

Yesterday we had an appointment at Rady Childrens Hospital in San Diego. He had a sedated echo cardiogram and a check up with his cardiologist. When we were first told that the echo would be "sedated" we were a little put off. CHLA never suggested that his echos be sedated. But honestly, it wasn't that bad. They gave him some cough syrup type sleep medicine orally. He cuddled up on me and dosed off in 9 minutes. I laid him on the table and they proceeded with the echo (an ultrasound of the heart), which took about 50 minutes. When it was over, we woke him up with tickles. We had one sweet little drunk money on our hands! I know its sad to see your kids medicated, but it was also really cute. He came out of the sedation very smoothly, no fussiness, no nausea. Then we met with the cardiologist to get the results.

The Doctor had good news, potentially great news and bad news. The good news is that his heart looks good. It's squeezing well, the valves have very little leakage and there was no mention of scar tissue from his surgeries. The potentially GREAT news is that his left ventricle is growing. (wait, WHAT?!) And because it's growing, he could maybe, possibly, potentially be a candidate for a bi-ventricle repair. AKA- WHOLE HEART REPAIR! Mind officially blown.

So until yesterday, Santi's path would have led him to the Fontan. The Fontan is commonly the third and hopefully final surgery most HLHS kids have when they are about 3 years old. But now we know there might be another option for him. We just have to be patient, do more research and see what they find in his next cath. Which takes me to the bad news.

He has to go in for a Cardiac Catheterization, soon. Like within the next few weeks. Remember what happened at his last cath? Yeah, our over night procedure turned into 14 days of IV antibiotics and an early Glenn! 27 days at CHLA.

Anywho, during the echo they saw some "collaterals," which are new blood vessels he doesn't need and could potentially cause problems. So they want him to come in for a cath to get the collaterals coiled and also to observe his heart function from the inside.

What a day! So much to digest and prepare for. After our appointment Santi was a little sleepy, but pretty much back to himself by bath time.

Heart Cath update #2

Guess what....we're still here and we'll be staying another night :(

They increased his heparin dose this morning. The dose they started yesterday wasn't enough and he still barely has a pulse in his right foot. They want to watch him over night to make sure the heparin works.

He was off of oxygen for 30 minutes this morning with sats ranging from 75-79, which is pretty good for him. But then they fell to the low 70's. Now he's on .25 liter of O2.

So now the question is, why is he still dependent on O2 even after they opened up the narrowing in his aorta? Dr. Takao believes that he's outgrown his shunt. He weighed in at 13.4 yesterday! So, that means he'll have the Glenn sooner than later. We are scheduled to consult with Starnes on 7/9 to set the date for the Glenn.

Heart Cath

I'm so nervous, I cannot sleep. Santiago is having his first heart catheterization today. We check in at 8:00am. I'll post an update this afternoon.

Cardiology Check Up

As you may have noticed, Santiago is still on oxygen. Most heart babies do not come home on oxygen. It's more common for them to come home with a feeding tube. We are very lucky that our little love is a good eater and has not had any gastrointestinal issues. The oxygen tanks are a nuisance and I hate that his cheeks are raw from having tape on them constantly, but I know this is temporary and we can get through it.

We have had many discussions with Santi's cardiologist about the oxygen and why he's still dependent on it. She thinks that there could be some narrowing in an artery, however, until today his echocardiograms didn't show any. At our appointment today she compared his echo with the one they did 4 weeks ago. She was able to see that there is a very slight narrowing in the aorta where it connects to his shunt. This is most likely scar tissue.

Next week, on 6/21, Santi will have his first heart catheterization. During the heart cath, they will enter through the artery in his thigh and and follow it all the way into his heart with a scope. They will use contrasting dyes to really check out his heart from the inside out. If they see any narrowing or scar tissue they will use a balloon, like angioplasty, to expand the area. This procedure is "minor" but it's still scary for us and there are risks. If all goes well he will only spend one night at CHLA.

If the cath shows that his heart is in great shape, he will have the Glenn (the second of the three planned surgeries) 1-2 months from now. If things don't look great, they'll do the Glenn a lot sooner.

So, if his oxygen dependency is because of some narrowing in an artery and they are able to open up the narrowing during the cath then he MIGHT be off the O2 a few days after the procedure. Fingers crossed!