Em Update 5/12/23

It's been a while! Emmett has had a wonderful recovery from his second heart surgery. Until yesterday. 

Rewind to over 10 months ago when Emmett had a very inspiring cardiologist appointment. Our wonderful cardiologist had stated, "He looks great, let's make an appointment for 6 months." This is a big deal. We were going every 4 months for an ECHO. 

Even 6 months ago, we got wonderful news, "He is looking great! No problems! I'll see you in 6 months." 

The night before his latest cardiologist visit, I had major anxiety. My heart was pounding, and I didn't sleep well. I was tossing and turning planning for the worst news possible. This is normal. I always plan for the worst with Em. It's not healthy, but it is what it is. I knew something was up. The mommy-gut ALWAYS knows. 

Fast forward to yesterday. "His stenosis is causing problems again. It is not closing properly. It could be that the repair made is not growing with him preventing it to close. I want you back in 4 months. We will decide in four months if he will have another surgery. This time, it's most likely a replacement due to his age." 

I stood there in shock hugging my baby. He crawled onto my lap, and the doctor continued. 

"Has he been lethargic lately?" 

Em had been complaining that he was tired for weeks now. "My legs hurt" and want to be picked up. I assumed that he was not feeling well due to the numerous ear infections. Plus, he is always laying on the ground playing with his toys. But, this new "legs hurt" thing was the issue. He's not getting the proper circulation. His oxygen levels are low, and now we must monitor his breathing.

I had a flashback of him turning blue. I had a flashback of him in the hospital sliced open with all the cords around him. I had the worst flashback of the weekly blood draws from nurses that crowded our home. My baby. My little heart warrior could be starting this all over again. 

Those that don't know the severity of a valve replacement, let me tell you. It's actually not that big of a deal. People get them every day, especially when they are older; however, on a little three year old that is a DARE DEVIL, it's a little overwhelming for mom and dad to deal. 

There are two types of valves. Mechanical and biological. Biological would be beneficial because the cow or pig part would grow with his body. He currently has a piece of cow in him, now. However, it's not growing with him. Hence, the possible surgery. 

Due to the lack of growth of the current part and the lack of growing in general (lack of eating and hitting his percentiles), most likely Em would need a mechanical valve. This scares me. He will be on blood thinners for life. Any bump, scratch, etc. would be a big deal. We would have to monitor for internal bleeding at all costs. He will need to have weekly blood draws to monitor his INR levels. The international normalised ratio (INR) blood test tells you how long it takes for your blood to clot. His diet will need to be monitored and ensure that he has proper vitamin K intake because that can change the INR levels. It's just. a. lot. 

So, here we are. Robert and I are in a sad place. We definitely spent some time in tears talking it out. The last time we went through this, we put all of our time and energy into Em. I gained an excess amount of weight, and we lost our relationship a little. We lost ourselves. 

I finally have my weight under control, and our relationship is rock solid right now. We promised to talk it all out and continue our date nights because we need each other. Our focus will be on our family. Not just Em. 

Stay tuned for our next update in about 4 months, and hopefully NOT sooner. We will monitor his breathing, lethargy, and over all health. Thank you all for your support.