Two Years Ago Yesterday

Yesterday was the two year anniversary of our first knowledge of Sam's condition Brugada Syndrome.

I posted about our story over the course of several days last year. You can revisit it here, here, here and here. It can be a bit difficult to read at times, because it was difficult to live through, but if you're new here, you might want to settle in with a cup of coffee and learn more about this dangerous heart condition. It could save someone you love's life one day.

11 month-old Sam in a wagon at UNC Hospital

Now here we are two years later and Sam's had an even more major surgery, with even more painful incisions. The difference is that now he has a little sister and I wasn't sick this time (praise God!). Also, we live in a different town. But, one of the similarities is that we are still contemplating what we should do for our future. We took a two year leave of absence from our previous position and the time is closing quickly when we will have to make a final decision. We were hoping this surgery would tell us more of what we needed to know.

This morning, Sam saw his pediatrician. Everything looks great. Sam's lung sounded clear and his incisions both look wonderful. I also got permission to skip the ophthalmologist appointment Carolina was supposed to have this week (which we have to pay 80% of) and just see the pediatrician on Friday when Sam gets his stitch taken out. Her doctor will check out her eye (in a very detailed way) again on Friday and we all get to skip going back to yet another doctor this week.

This is especially important because the H1N1 flu bug is going through our town. I cannot tell you how packed the parking lot was today and how many teenagers I saw with masks on at the pedi's office. They rushed us right back, skipped the co-pay (they'll bill me later) and one of our church members who works there came back to help me with the kiddos the whole time. Sam wore a mask and they gave us several more to come back with in the future.

I love small town life.

The bad news on Sam is that he's still in a great deal of discomfort over night. I awoke this morning at 1:30 with him standing by my bed screaming. I don't know how he got out of his twin bed without hurting himself more, but he was in an extreme amount of pain by the time he got to me. He told me he didn't call for me at all, he just got out of bed. Then he woke up again at 4:30 screaming out in pain. This time we pulled out the big guns and gave him his narcotic. He slept peacefully until 9am. So did Carolina, actually. I think she just needed an excuse to sleep in - she's totally beat just like the rest of us.

Sam seems fine with just Tylenol throughout the day. At night, especially after an active day, he gets a bit stiff and uncomfortable. I think we'll continue the narcotic when he wakes up in pain throughout the nights this week, but it should be less and less that we give it to him.

So, we're officially quarantined again, but this time Daddy is home so it's not so bad. Keep praying for Sam!