Wednesday, February 10, 2010

I {Heart} Matt

Today Matt had an appointment with our new pediatric cardiologist. He's been overdue for a check up, but with moving (three times, if you count when Josh came down here and our insurance changed and we had no access to AZ docs in MT) and all of the other joys of life, his appointment got postponed. But he went today.

We like our new doctor. He's an older gentleman. If we went to junior high together, then you might remember Mr Willerton. He looks kind of like him, but with a mustache. And not annoying. He's actually very quiet and seemed to be very thorough with Matt's check up. I was glad for that. I hate feeling rushed with the doc, especially when it's an important check up like this.

We went over Matt's history with him: born with Pulmonary Atresia, had 4 balloon caths, surgery to expand the size of his pulmonary valve in October 2005, and surgery to replace his pulmonary valve with a bovine valve in March 2007. Matt has been very preoccupied about his heart lately. It seems like everyday he brings it up. He says his heart hurts every so often and the doctor let us know that it's a good chance that his scar site hurts because as he grows the skin at his scar pulls a bit and can be uncomfortable. But sometimes Matt uses descriptors that worry me a bit.

Yesterday, on our way to the library, Matt said his heart "stings". I asked if it stings when he breathes and he said yes. I told him to sit still and we'd see how he felt in a minute. He seemed fine and I didn't think about it again until we were on our way home. I asked if his heart still stings or had the feeling passed. He said, "The feeling has passed. But it does sting when I look at something orange. OH! I just looked at something orange and it's stinging again." So, I don't know how seriously to take all of his comments.

Because we didn't have the medical records to compare today's test results to, we don't really have a definitive idea of how he's doing. Matt's pulmonary valve leaks. That means that blood pumps through it, but some swishes back through (like back wash). This valve has mildly leaked since it was implanted in 2007. And some people have a mild leak in their original valves and never really know it. So, a mild leak isn't a big deal. Today, however, the doc said he'd classify Matt's leak as Moderate. I'm not really sure what this means. First, we need Matt's records to compare doctors' notes and see if our new doctor's idea of a moderate leak is the same as our old doc's idea of a mild leak or if Matt's valve is losing some of its potency. Then, we'll need to find out how long we can go before replacing the old valve. Do we wait until there is a severe leak? Do we catch it before it's a higher-moderate leak? I don't know.

All I know is, I'm a mother with a son who faces heart surgery no matter what. Every check up is a tug at my own heart. Will today be the day I have to confirm my son's worst fears---that someone has to cut him open again? It scares me to death. He's so brave, though. He followed all of the directions from the nurse and doctor today, even though he thought they would have to cut him open right then and there at the appointment. It wasn't until they were putting the stickers on him to monitor his heart rate and he got a little tense that I realized he was waiting for them to cut him. But he was obedient and did what he was asked by complete strangers. He had faith in them that they would help him, but he was scared too.

When you grow up in a family that is relatively healthy, with very few accidents that happened and no major illnesses, it's hard not to resent having health issues in your own family. Sometimes I question, "Why do we have to deal with this? Why is it my son that has to face these challenges?" I don't have the answer for that. But I do know that I will be there for him and help him however I can. I'll happily sleep on his hospital bed with him as he recovers (I'm 40 lbs lighter, so I'll fit better this time). I'll drive him all the way to the middle of Scottsdale for him to see his doctor. And the wonderful thing is that Josh will do it too. He sacrificed a bunch of sleep today to go with us. He worked last night and is working again tonight, but he really wanted to be there with Matt at his first appointment with a new doctor.

I discovered today that I really hate being ignorant. As we watched the echo cardiogram take place, I couldn't tell what exactly we were looking at. It looked like most of his others, but I don't know what a healthy heart looks like, so I didn't know if there were any changes. And I always hate interrupting the doctor in the middle of it because I don't want him to miss something or lose his train of thought because I bugged him. I'm very tempted to look at learning how to be an echo cardiogram tech. I could learn what I need to for Matt and work in a doctor's office, away from the blood and gore. Maybe I'll check that out, after the kids are a bit bigger of course.

So, the bottom line is, Matt had an appointment, but we don't know how it went. He'll go back in June to make sure the leak isn't getting any worse. Keep us in your prayers.

3 comments:

Lori said...

There is a reason that this is happening to Matt. He's strong enough to have it. And you guys are strong enough to get through it too. I mean, just read your blog. You guys are obviously going through a lot right now, but you take the time to be with Matt and comfort him when needed. Just keep in mind that Heavenly Father knew what He was doing when he put your family together. Immediate and External. I will gladly help you guys out as best as I can also!! I love you guys and you are doing an exceptional job at getting through this.

TMI Tara said...

xo hope everything turns out okay.

Kandice said...

Wow shelley. That is so much to worry about and so much on the shoulders of a little boy--who sounds so grown up and mature. My mother in law just had her valve repaired last friday. It is such a major deal for a grown up, I can't imagine it with a child. I will keep you in my prayers for sure. We love you!