Dodged a bullet

It's taken a while to sort through what we heard from the cardiologists in Milwaukee. They did an echo, checkup and exercise stress test. Then they announced that JJ looked "better than advertised" so they decided to skip anything invasive like the cath.

Wow, we'd never had a cath canceled. And really didn't expect to get this kind of news. I guess they expected a much sicker kid.

Of course they told us that when he starts to show symptoms, he'd need something done. And it wasn't likely that they'd do any work on his valves. Instead, since he'd need work on two valves, they'll probably list him for a transplant. Scary stuff. But the doc said we probably had a handful of years until that was going to happen. I'm hoping for a really big handful!

So we escaped Milwaukee and dashed for home. Kids were upset that we didn't stay in a hotel and go swim. We were glad to save the money and sleep in our own beds!

So the saga--and waiting--continues. By the handful!

In just a month

In just a month we should be through with JJ's cardiac cath. Then we'll know which direction we're meant to go with him. I'm not looking forward to it, but anxious to get it over with at the same time.

It's not like it's his first cath ever. After all, since being diagnosed with hypoplastic left heart syndrome and going through the four surgeries, he's had plenty. But this one feels so different.

We're surely hoping that the docs tell us we can just leave him alone for a bit—at least a year. But there's a chance he'll need repair or replacement of two valves. And there's always that chance that they'll decide he needs to be listed for a transplant. That's the scariest option.

Really hoping that God takes us down the easy path this time. Too hard to think about having my kid in surgery again. Besides, he's way too busy enjoying summer to be bothered with all that medical stuff. The cath alone will be too much of an intrusion for him!

Guess we'll find out what the next month will bring. 

More celebrating

This week we celebrated JJ's birthday--8 years old. Hard to believe all that he's come through in just eight years. We'll find out in July what else his journey has in store for us all.

For now, we're not thinking about that, just celebrating 8 wonderful years with our little guy. Happy Day!

All kinds of celebrations

Today was Celebrate the Arts day at JJ's school. It's a great day with the kids singing and dancing then a tour through the school hallways to view various art projects. Impressive stuff.

And I can't help but think about how far he's come in 7 years. Aside from just the four heart surgeries, he's overcome gross and fine motor difficiencies and here he was dancing with the best of them! Guess it's not enough to celebrate his abilities, but his existence. Some kids don't make it this far. In the past, none did. He's still got his struggles, but today he dances.

Now on to big brother JoJo. Impressive preview of his 4th-quarter grades. His grades also include habits of learning grades, which also were steller. Really not a lot to worry about there, as long as he can stay focused.

And, even better, he was actually interested in what little bro was doing at the program--interested in sharing what songs he did and hear about the dancing JJ was doing. Nice time watching the two of them share similar yet difference experiences. And they didn't even end up in many arguments--something else to celebrate!

Avoidance does wonders

I'm avoiding making a couple of phone calls these days. One could provide relief, but the also could add stress. The other will only add stress.

I need to check with our health insurer to see what it will cover for an upcoming procedure for my son JJ. He was born 7 years ago with hypoplastic left heart syndrome, a serious heart defect that means he is missing important parts of his heart. He's had four heart surgeries so far.

The docs want to do a cardiac catheterization to see how his heart is doing and measure the pressure in it. Plus they'll get a better look at two of the leaky valves.

The doc told us there could be three scenarios based on how things look:

• We could end up leaving him alone for a while (this is what I'm hoping for)
• He may need surgery to repair or replace those valves (yuck)
• He may need to be listed for a heart transplant if it looks like the valves can't be repaired/replaced (double yuck!)

I started a new job last year and haven't really had to test out our new health insurer. Plus we'd always kept JJ doubled up on both my and my hubby's insurance. But since hubby's job got eliminated last year, we're back to single coverage. Worried about what will be covered and how much out of pocket will be required.

Plus, we want to take him to an out of network facility for the procedure and possible surgery. There is a hospital in network that can do the cath and surgery, but we've never used it. And they've only recently started doing pediatric caths and complex heart surgeries. Not really thrilled about being among the first here. And even if the surgeon is great, we can't bank on the rest of the staff we'll encounter being equally as great and equally as experienced in these very complex procedures.

So here I sit, avoiding making both calls. Ignorance is bliss for now. But it doesn't necessarily make the stress go away.