Sunday Evening

We made it home yesterday without event. It was a difficult ride for Sam during some portions, but for the most part he did great.

When we got home last night, there was a huge bin of groceries and hot dinner waiting on our front porch. It sure was a nice welcome home. My friend Casey and her family are really taking care of us. Even today my friend Lauren did a bit more grocery shopping for us. There's just something about being home...

I noticed that Sam has some bed sores on his back when I went to bathe him last night.

For the record, Sam has three incisions - one straight down his chest, one starting on his shoulder blade in back and going under his armpit toward his chest and the third is the chest tube that was for draining (under the armpit one). He noticed the huge stitch in that one tonight and asked what it was, but the other two are glued shut on the outside.

I can't remember exactly what I wrote before about his procedure, but I wanted to clarify a bit on the subject since there has been some question. Skip down below the italics if you're already on board with what happened.

Sam had a defibrillator implanted when he was almost 11 months old. One of the wires connected to his heart was not reading correctly, and the number kept going down (they implanted it at a 7 and it went down to a 1.8). His doctor wanted to reposition it, hence this surgery.

What we didn't know was that Sam's doctor didn't actually want to "reposition" it, but instead wanted to add a new one and leave the old one where it was. If he actually removed the old one, he'd have had to crack his breast plate and it would have been very difficult for Sam. Instead of removing it, the surgeon just cut the wire and capped it off.

In the meantime, the surgeon put in a new lead on Sam's left ventricle, hence the under-the-armpit incision. The surgeon tried for over an hour to find a good number and kept coming up with fives or sixes even after sewing it onto Sam's poor heart, which aren't great numbers. Then, all of the sudden, he landed on a 22. I have no idea what the unit of measurement is, but I know a 22 is a great high number. He sewed it on and it stayed at low 20's and upper teens.

Then Sam's surgeon had to make an incision down his chest and belly again to actually remove the defibrillator in order to unplug the old wire and plug in the new one. He had to make the incision a lot longer than he intended because it was such a tight fit. His surgeon said Sam's body had really embraced the defibrillator over the last two years. He said, "Getting it out was tight and getting it back in was even tighter."

So...any questions? Feel free to ask.

The VTAC episodes Sam had were probably a result of high fever, electrolyte imbalance and irritation of his heart. He will always struggle with arrhythmia's and high fevers as is typical of Brugada patients.

We heard that last week here in our county there were 31 cases of the H1N1 flu. As a result, Sam's cardiologist has suggested we not do anything public for several weeks - no church, no playground, no library...nothing. When we go to the pediatrician's office, we need to put masks on the kiddos.

We have an appointment in the morning. I will write more as I know more.

Thanks for your continued prayers and support. A special thanks to Doug and Nina who spent the night with me in the hospital that crazy VTAC and convulsion night. And to Shannon for always being willing to post here. And to my brother and his wife for surrounding us with love and providing meals from folks we have never even met.

Hopefully we'll have good news tomorrow about Sam's lung and his swollen incision.