Ironic

... but not funny. Not really, anyways.

Our Spoiled Baby

It's amazing how spoiled the hospital makes Joey. Before his Cath last month, Joey was sleeping through the night. Kate would stay up a bit late and give him a bottle at 11 or so, and then I'd get up a little early to go to work at 4:30, and feed him then, and he'd sleep until 7 or 8. So through the night being 5.5 hrs, but since we could trade off, it worked. And then he went back to the hospital.

It was an odd stay because he was definitely alert and looking normal, with only an occasional weird cardiac rhythm. And he learned that, at any time, especially at night, he could fuss and get a nurse to come coo at him, rock him, and attend to his every need.

Spoiled boy.

After we got home from the Cath, but before the VSD repair, he added a 1:30 AM feeding to his arsenal... So there went sleeping through the night. We'd trade off nights, and survived. And then he went back to the hospital.

This was also an odd stay, because he did so well so quickly. He was extubated Friday (not 36 hours after the surgery), and in order to extubate, he needs to be alert, so he was already off of the sedation drugs. Normal post-op procedures required that he stay a minimum of 6 days, while he was weaned 0ff of any support by Sunday. So again, he learned that his own slave nurse would come and coddle him, coo at him, feed him, and rock him at his beck and call.

Double spoiled boy.

He has yet to sleep for more than 1.5 hours at a time when not being held.

We love you, Joey, but it's time you remember how to sleep!

Home at Last

It was a beautiful, albeit surreal, experience leaving the hospital with our Joey on Sunday Wednesday. (Kate hasn't been sleeping too much recently...)


After the drama surrounding his cardiac cath in early September, we were mentally prepared for the long haul this time. Apparently, however, Joey had yet another surprise for us. To quote Fr. Mick, "Rocky vs. Heart Condition? 5-0 ROCKY!" Open-heart surgery ends up being his shortest stay yet.

Walking out the past 2 times has been "See yall soon" parting. This time we hope to drop in after a clinic visit, but a long time before he requires their care. As we walked out there were a lot of hugs and cheek-kissing (for Joey, of course! Who can resist those cheeks!?)

It is a beautiful gift to have formed such good relationships with Joey's healthcare team. We LOVE our Children's Cardiac Heroes!

Boring Life in Step-Down

Joey is busy doing, well - nothing :) He is hanging out in the step-down unit, called "HKU" among other old friends. We love the nurses here, too, and they are all amazed at how big our little boy has gotten and how great he looks!

No more oxygen through the nasal tube, he's breathing room air and loving it. Much better than trying to scratch out the cannula anyway. This is a huge test, as his lungs are a little hazy on x-ray, meaning there is still some fluid there. With the increased movement, coughing, and Lasix the hope is this will quickly decrease. Also, he's receiving respiratory therapy (RT) for "chest PT" to help his move that fluid and keep coughing. He actually likes the cupping pounding on his back. I told him some people pay big money for specialty massage like that!

His cheeks are so rosy! With that VSD (hole) closed, the blood is now circulating the way it should, delivering oxygen-rich blood to his body, and he has the beautiful pink color to prove it.

His incision is healing nicely, although the wound-care will continue. Also, for the next several weeks we will have to be extra careful with his chest, including how we bath him, how we position him, and how we pick him up. That sternum (breastbone) needs some time to heal.

Oh can that boy eat! Well, he didn't grow those cheeks by passing up meals, that's for sure. The nurses still laugh that the fact that we worked so hard to get him to take a full 2 ounces of milk just 2 months ago. Tonight he just ate 9 ounces in 4 hours time. Yup. He's serious about this food!

SPOILED BOY! He loves having all these nurses at his beck and call. Which he does, often. :) And they love it.

Tuesday morning they will look at another chest xray, more labs for blood count and electrolytes, see how his pain meds are working. He will also have an echo done to take a look at all the repairs and measure pressures in various parts of his heart. This gives an objective reading of how his heart is responding to the repair, as it basically is a change in anatomy. The heart, including that darn valve, has to adjust to the corrected blood flow.

If all this goes well we could be looking toward to front door as early as Wednesday! Keep up those prayers, it would be GREAT to be home in such a short time!

New room!

So Joey did well overnight, and they're going to move him to the stepdown unit today! Woo Hoo! There are a certain number of things that have to happen to move to the stepdown unit: can't be on a respirator, or high-flow breating, he can't need an arterial line, can't have a wound drainage tube or catheter, etc. He was already doing well enough to "qualify for" the stepdown unit when I got back to the hospital yesterday, but they try not to move them before 72 hrs. post-op.

Everything is going wonderfully! We'll keep you all up to date!

Thanks for the prayers!!

More improvement!

Joey's doing well! They removed his chest drainage tubes, along with all cardiac medication, and he's handling it amazingly well! He's gradually getting more and more tubes and monitors removed, and is handling them all in stride. Gram is holding him now, and he just polished off a bottle.

If all goes well, he'll be transferred to the stepdown floor in HKU tomorrow, which is the soonest he's eligible. (Although the charge nurse said that he's doing so well that if they needed a bed, he'd be the first to go!)

Thanks for all the prayers!

Joey's off the Ventilator! - Part 3

Joey's breathing on his own again! We're at home, so we just heard over the phone from the nurse, but he'll begin eating again soon, and that should make him very happy! He still has the weird rhythm, but they hope it will go away on its own in a couple of days. He'll continue weaning off of the cardiac medications, although he'll continue using the pain meds for the foreseeable future. We're still very excited!!

A New Rhythm

Joey continues to do well, and has surprised us with a few things overnight and this morning. I mentioned that arrhythmias are fairly common after heart surgery with bypass, and yesterday we found out that he had a brief run and then brought himself out of it right after surgery with no intervention. Last night he was having too much fun (he must have been playing soccer in his sleep) and his heart went back into this arrhythmia. The good news is that his heart got over it before, so it is likely to do the same thing again, hopefully within a few days. The other good news is that there are still pacing wires going into his heart left from the surgery (intentionally, of course!) and they can "pace him out of it." This means that although the monitor looks a little funky, Joey is not in danger from this rhythm. If it persists there is the possibility that it could compromise his blood pressure, but right now the doctors are not too concerned about that.

The other topic of interest in the question of when to extubate, or remove his breathing tube and take him off the ventilator. They changed his sedation medication to one that does not dope him up quite so much, but he's been breathing over the vent for several hours anyway! The process is to wait until the medications are flushed from his system, usually about an hour, and he starts to wake up a little more.

Ironic: Last night they had to constantly give him bolus medication because he was not as sedated and was getting feisty. He kept waking up and moving his head, which is not a great idea as it can cause swelling around the breathing tube. This morning they're ready for him to wake up and he's sleeping happily.

So as they were talking about beginning the "Extubation Readiness Test" (ERT) the doctor looked over and noticed that the attending doc had already switched the vent settings, and that Joey was breathing on his own! (He is still, and will remain for right now, intubated on the vent.) What this showed us is that he's ready as soon as we are. For the next couple of hours they will keep him on the ventilator to help him flush out those meds, and check his blood gases to make sure his heart is happy with this situation.

Patrick and I are probably going to use this opportunity to go see our girls at home. Joey is stable and sleeping with a nurse all to himself, a time when we don't need to be right at his bedside and are striving for balance between life at the hospital and life continuing at home.

Joey's Goals for today: watch that heartbeat - hopefully his blood pressure will stay stable and he's able to come off some of the heart medications. Watch the breathing - if he keeps taking those deep beautiful breaths we can take the breathing tube out this afternoon! Those, at least, are our goals for Joey. We'll see what he has to say about that.

SUCCESS for ROCKY!!!

And there is it, folks. I think *hope* you can read the different labels. This is a very simplified drawing to give a basic idea of Joey's different defects.

Today's Surgery was to close the ginormous VSD ("hole") right there in the center. They took a patch to cover the hole, using a synthetic material. Dr. Sinha then removed the PA band to open up his pulmonary artery (PA). This could have, but did not require a graft to help keep it open.

The surgery was full of potential serious complications, including dangerous rhythms requiring artificial pacing if the stitching ticked off the electrical circuit, but when they started Joey's heart back up it went into a nice sinus rhythm the way it should. Other than the obvious risks with the bypass itself, this was the most serious lasting risk, and so far Joey has avoided it!

Also, when the hole is closed it forces the heart to accept higher pressures, which can compromise his aortic valve function. Remember that aortic valve and how much we love it? They were able to get a really good look (I mean, they were right inside there after all) and verified that the stenosis is significant and it is leaky. We will deal with that later. For right now it seems to be tolerating the pressure changes well!

The next 24-48 hours are still very touchy for our Little Rocky. Mostly thanks to that valve his heart has quite an adjustment to make. Also, the dangerous tachycardia could surface anytime in the next few days. For right now we are THRILLED and so so thankful that Joey came through the surgery and all necessary interventions were successful!!!

While Joey was in surgery and we had several hours to spend, we were able to donate blood here at CNMC and also attend Mass. God is so good, the timing was perfect and the Graces were flowing. St. Callistus, I have never thought about you before, but I am thanking you on your feast day now!

St. Joseph, Pray for Joey

Sweet Sounds

This past Friday was Joey's follow-up with the otolaryngologist. You know, the Ear, Nose, and Throat guy. Anyone who's been near him in the past 2 months knows his voice is back nice and strong, but now we have the official doctor's report stating as such.

The Doc was wonderful, and the first thing he said when he walked in the room was "WOW! Look at that Chubby cardiac kid! He looks fantastic!"

And then, he poked a little camera through Joey's nose and down to see his vocal cords. It sounds terrible, but it only lasts a quick second. And Dr. Shah declared them completely, 100% perfectly healed.

Quote of the day: "I am AMAZED at how fast they came back! Just amazed." ~Dr. Shah

Next stop, the opera :)