His first cold...

So Joey was supposed to have his head MRI the day after Thanksgiving. In retrospect, that probably wasn't the best day to schedule one of these sorts of things... I mean, who really wants to get up at 5:30 after a long evening of turkey, wine, and football?

Since he's so small, they have to sedate him for the 1/2 hour procedure so that he doesn't move, and since they're going to sedate him, he can't eat for 6 hours or so before the procedure! So we always try to schedule them first thing in the morning so he can (hopefully) sleep most of those 6 hours. He also has to wake up and start eating normally before being released, and with Joey, it's still a better idea to give him time. If he wants an extra few hours, I'd rather give it to him than require a silly overnight stay just because his recovery extends beyond business hours. Normally, I'd be anxious about my 6-month old needing general anesthesia, but Joey's already been-there-done-that. He does general like a champ! Asleep. Awake. Asleep. Awake. He's got it down pat. It wasn't really until the morning of that I started get a tad nervous.

Kate took him in, while I went to work, and the girls' grandmother stayed with them. Unfortunately, Joey had a cold that was bad enough that the anesthesiologist didn't want to put him under, so we had to reschedule. If he's not deeply asleep enough that he can still cough, the coughing would mess up the MRI, and if he is asleep such that he wouldn't cough, the phlegm could block his airway and turn into a bad situation very quickly. So we're on "wait" again!

His cold hasn't gone anywhere. Last night he wasn't able to keep any milk down, and we were thinking, "Just great...the last thing he needs is to be admitted for an IV drip!" But overnight, we use a thicker formula to help his reflux and he kept all of that down. So we'll probably keep up with that today to help little Rocky get better. hmmm...these posts are decidedly less shocking now that he's home and doing so well. It's okay...I'll trade his health for a more boring blog any day!

You might be wondering why he needs a brain MRI. Back when he was in the hospital for the first time, and on the ECMO (life-support) system, he positioned himself squarely with two problems that were opposite of each other.

On the one hand, ECMO requires the drug Heparin, which is a blood thinner, to keep clots from forming in the system. Blood clots form more easily on the plastic tubes that make up ECMO, and a clot has the potential for being injected right into his heart where the ECMO deposited the blood. Blood clots are not good things, and the doctors wanted to avoid them at all costs! In fact, they found a clot attached to the wall in the tubing that deposited the blood back into Joey. They had the surgeon come up and replace that section of tube. Since it happened once, they were hyper-vigilant about preventing another.

On the other hand, he had a small bleed in his brain. On the scale of 1-5, it was a 2, and typically those don't require any intervention--they just wait for it to heal. Unfortunately, when you want bleeding to stop, blood thinners work are no the best option... So his bleed lasted 3 or 4 days, which is longer than it typically would have. They also weaned him off the ECMO sooner than they typically do. The weaning wasn't unsafe...he did very well with it, and they would have left him on longer if he needed it, but typically they like to let them rest after a procedure for a couple of days to heal before starting to put more demands on his heart.

Obviously, at the time, getting his heart to support himself was the important goal. The bleed wasn't desireable, but there wasn't much they could do. They did a CAT scan on him, and it looked like there were some areas that suffered a lack of oxygen (a stroke) for a brief time, but the extent of it can't be determined without a MRI. So we've known he's going to need one for a while now. Also with the ECMO tube being replaced, he had reduced blood flow for the seconds it took to stop the machine, take the one tube out, put the other one in, and restart it. And then with his heart going into a non-pumping rythm during his second cath, there were a few seconds without oxygen before they started CPR. (Since there were a multitude of doctors and nurses in the cath lab, I doubt it was long before someone started compressions! They told us that the blood flow was virtually continuous. And since they had a monitor on, they could tell how hard the compressions had to be in order to produce correct blood pressures... Ah...the upsides!)

So he has a potential for brain injury, but we don't know yet. There's not really any intervention that we'll be able to do, even when we do find out, so that's why we haven't been in a rush. That and the fact that he needed another major surgery last month. That sort of preoccupied us. We have met with a neurologist already, and he was very optomistic. He used the analogy of the brain as a book, and a stroke tears pages from it. In Joey's case, it was likely minor, and he was so young that the pages were likely still blank. The brain has a miraculous way of adapting and if there is an area that's torn out, it would likely store the information that should have been there somewhere else. (The real damage from strokes that you see in older people is when pages get torn out that have memories on them. Then the brain must re-learn that info, which is sometimes impossible.)

He's doing great as far as we can tell, however. He's a little behind the curve developmentally, but he spent 7 weeks of his life asleep on tubes...I don't expect him to be average. He's working on sitting up now, and is getting stronger all the time. Yesterday, he rolled over for the first time. So, at end 0f this post, instead of with doom-and-gloom, you should leave with a happiness that he is still progressing nicely; he's a good little boy. And as we sit in Advent preparing hopefully for Christmas, we prepare hopefully for Joey's life ahead: not a perfect boy, but a wonderful gift that we're lucky to have.

and GROWING

This is what 15 lbs, 14 ozs looks like:


Chubby, Pink, and Happy


Check out all those chins!

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!!