Back to Sunset

 So, what’s new? 

Lots and nothing. 

A super mad Em while hanging with mom during the day.

A freaking happy baby while hanging out with dad at night

Em is back in the hospital from a scare. With CHD, we are always concerned with rapid breathing, sweating, and turning blue. These are the signs that his heart is failing us. Well, Em has been sweating a lot lately, has had low grade fevers, and a horrible cough. 

After many visits to urgent cares, doctors, and emergency rooms, we were told he had a severe cold, creup, pneumonia, to RhinoVirus (the common cold). 

It started 2.5 weeks ago. The coughing was out of control. He had a fever, and I took him to urgent care. 

A week goes by, and he’s still not better. We head to ER, and get diagnosed with creup. Next day, specialist calls and changes it to pneumonia. 

Another week goes by, and still not better. Instead, I get a text from our amazing nanny. “His lips are blue, he’s cold, and lethargic.” I immediately run to pick him up and take him to Woodland Hills. Chest X-ray is done, and it doesn’t look any better so they transport him to Sunset for Em’s next hospital stay. We know the drill. 

Emmett needed oxygen as his stats were low, but he didn’t want it in his nose 🤷‍♀️. He had a low grade fever still, and he was pretty miserable throughout the day. After many tests- Covid negative, rhinovirus positive, echocardiogram- ugh. 

The echo: I saw some colors on this echo that I’ve never seen before. Yellow and light blue. These are the colors of velocity. It basically means the blood flow going certain directions are abnormally high. The pressure on the right side of his heart is the highest it’s ever been. But- he had surgery? You’re probably thinking? Yes, you’re right. It wasn’t a guarantee that the repair would hold. He would most likely need a replacement in the future. It looks like that’s happening sooner rather than later when we expected. 

If he wasn’t sick, he would be having another surgery any day now. It’s that serious. 

Here’s the deal though. He’s sick. All this pressure on the heart could just be that his body is trying to kick this virus out, and it might subside when he’s healthy. Or, it could be He’s sick because of his heart! All the symptoms are all too closely related. 

So what do we do? What we always freaking do. Wait. We have another echo in 2 weeks. That’s all I know.

Our family is stretched thin. We are exhausted. We rely on our family for support, and we are completely over the complications that happen every month, but as usual- we will get through this as well. 

Hey, how’s the weight gain? It’s ok. OT and GI say to not feed him orally bc of the pneumonia and fluid in his lungs, and the peds doc at hospital says to do it. I don’t trust him. I want the swallow study first. So- more NO news on that really.