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.

Glad to be home! But why does it take so long to get discharged from the hospital? When the docs did their rounds, they told us we could leave if Josh did well with breakfast (no throwing up). That was 7:30 a.m. We didn't get out of there until nearly 1 p.m. And supposedly all we were waiting for was someone in pharmacy to talk to us about the meds (he didn't tell us anything we didn't know) and give us our discharge orders (which took about 5 minutes).

At least we only had a 20 minute drive home, but it would have been much nicer to get out of there around 9 a.m. That seems reasonable to me.

Today Josh is doing really well. He has some pain, but we're managing that with Motrin--and occasionally tylenol w/codeine. He is much happier at home.

Like they say, amazing the difference a day makes. Or in this case, 7 hours. JJ is feeling lots better. Now he won't stop eating! He's awake very early and interested in playing computer games. Since he's managed to eat up all the food I stashed in the room overnight, I'm off in search of more.

Poor JJ! He's having a tough time with nauseousness following his surgery. Hoping to get some food in him before the night's over. At this rate we won't be going home bright and early in the a.m. :(. Keep fingers crossed that tummy issues clear up soon!

Just hanging out here

Still hanging out at the hospital. JJ is a bit nauseated and not able to eat yet. I hope this passes soon. Despite the nausea, he's doing well. Doc says the surgery was textbook, and it seems like the only problems are those caused by the anesthesia, so no big deal there. Time will remedy all this.

I'm so proud of JJ, he was so brave today and continues to be! He's a trooper!

today's tummy tuck day!

Today's the day that JJ gets his feeding tube opening closed. Luckily it's a fairly quick surgery--should take only about an hour. But they'll still have to put him under general anesthesia and intubate him for a respirator. So we're nervous.

But we're also so glad we got to this point. When he got his feeding tube at 8 weeks old, we had no idea when and if we'd ever be able to get it out. The tube came out last summer, but the hole didn't completely heal up on its own. Today—more than seven years later—closes the chapter on that part of his hypoplastic left heart story! Yeah!

Tummy tuck

JJ is getting a tummy tuck this week.

Or maybe we say he's getting his belly piercing undone?

Either way, it's a big week. After 7 years, we're taking him in to have the opening (fistula is the official word) from his G-tube closed. For good. Wow, for so many years I was afraid to even imagine this ever happening.

But it's been a year since his g-tube button was taken out (ok, it actually fell out during a summer field trip last year, not exactly planned). And it had been about a year before that since we'd last used it. But his stomach didn't exactly seal off the opening completely as expected. So now nice Dr. Lund will be doing the short surgical procedure to close it off.

Wow. Just like so much in JJ's life, we can't believe we've gotten him to this point. He's handled four heart surgeries, multiple cardiac caths, plus assorted other tests, scans, pokes and more--all in his short life. This is a good step. Of course he's terrified because he doesn't really remember all those other things. And I think he feels like that button and this opening are as much a part of him as his thumb.

But in just a few days, that extra belly button as we call it will be gone. A small step. But really a huge leap for him. He's gone from hardly eating to consuming handfuls of Oreos in a single sitting. Of course, he's still small--around 37 pounds and 42 inches. But every inch and pound is so well earned.

So Wednesday when you're going about your day, give a minute to sending good thoughts and prayers our way that all goes well during the surgery. He'll still be intubated and under anesthesia, so anything could happen. But with luck and God's will, he'll zoom right through and we'll be outta there on Thursday--minus that spare belly button.