Possibly the last post about heart surgery, eh? Fini!

Not the last blog post, silly! Just the last one about heart surgery.

Ok. So Jacob had his follow-up with the cardiologist this week and I'll cut to the chase - it went great! Jacob's Dad was large and in charge for the myriad of testing and he reports that the staff still isn't sure where everything is in their lovely new space (he even had to explain to a nurse where radiology was)... but he and Jacob managed the morning pretty handily anyway.

The cardiologist reports that Jacobs heart looked great on the echo, all the swelling (from surgery and working too hard prior to surgery) is gone and it's back to normal size. Lungs? His lungs were "clear as a bell"!! No fluid around his heart and none detected in/around his lungs. All good. Good. Good.

His sutures that were still on the drain tube holes were taken out and now those are healing nicely. And his chest scar is almost completely healed. It's really amazing.

Chylothorax, you ask? So since there was no fluid around his lungs, we can stop with the crazy yucky formula and go back to our old faithful formula....yay! ...although unfortunately we have to do a transition formula for two weeks first... Boo! (But he is tolerating the transition formula much better so that's ok. We'll get there.)

That's the follow up scoop. No cardiologist until August! Can you believe? And then after that we go to only yearly check ups. Wow!

Far be it for me to point out that it's not football season. But I think cute overrides sport season appropriateness, no? (and a shout out to our friends C & CC who sent this to Jacob! Cuuuute!)

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BTW. If you thought Jacob's parents didn't have enough going on now that his surgery is over... Oh don't you worry....

Back in the saddle... er ...stroller.

What's the big deal?

I'm just going for a walk with my Mom and Dad to get Indian food.

Heart surgery? Ancient history.

Yes. Unbelievably Jacob and his patched up heart is back home and largely back to his little Jacob self. A little fussy today and still lovin' the hit of Tylenol every four hours but good, good, good.

All three of us slept like rocks last night. We all needed it.







Our departure from the hospital wasn't without some drama over a wayward formula delivery (long story) but we finally made it out about 7pm (see Dad run).

Not, of course, without a sponge bath (Jacob, not Dad) from one of his favorite nurses. Lucky little boy. Which he didn't enjoy at all...

Amazing that his little body was so covered in medical what-not only a week ago. But here we are... all de-lined with only a few bruises and stitches as remnants. And under that tough guy chest scar is a stronger heart and much happier lungs.  Precious baby heart and lungs. Yay for you!

We're not quite done. We have to stay on the yucky (per Jacob) exotic formula for at least another week. Follow up with the cardiologist is next Monday and we will know then how the treatment for the Chylothorax is going (hopefully gone). But we did get an echo on Monday before we left and they said his heart looks great... so that was awesome news.

Now to settle back into life, continue to recover quietly at home, and enjoy the normalcy of coming back from a walk with run-of-the-mill baby spit up (remember: yucky formula) all over me and Jacob.

Chylo....what? Chylothorax

So one of the contributing factors that is extending our stay is a complication called Chylothorax.

Treatment includes a low fat diet (ironic, right? it was only a couple months ago we were pumping a high fat diet into his tummy for a different complication), and keeping the drainage tubes a bit longer to make doubly sure the excess fluid has drained properly. Jacob will stay on the new low fat formula for 4 to 6 weeks and have several follow-up X-rays to make sure fluid isn't building up on the lungs.

So here's the puzzle - switching formula on a baby is no picnic. Especially a G-tube fed baby who can't give you any intake cues. Doing it post op with constipating drugs on board and then throwing in a switch to oral pain meds that can upset little tummies....well... that's the complicated food and oral pain med transition. Try to solve that one, you know, while keeping Jacob as well hydrated and comfortable as possible as he recovers. Good grief.

Usually they don't like you to hold a baby until the drainage tubes are out but since we have this extended situation on our hands, the awesome nurses (nurses are so awesome) have tricks up there sleeve for securing the tubes safely enough to carefully hold him.

Jacob and I are very greatfull of that!

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In other news... cardiologist report today: Jacob's chest X-ray from this morning (they take chest X-rays every morning) looks beautiful and he sounds perfect. LOVE to hear that.

Jacob also had an awesome day. He got to sit up and we read lots of books, played with a lot of toys, and had lovely naps. What more could you want 5 days after heart surgery?

More about Chylothorax...