Another 1-year-ago Memory

Remember one year ago today? I sure do. In fact I have such a vivid memory of it that my stomach gets tight when I remember sitting in that waiting room outside the cardiac cath lab.

There are a few silly things that stand out in my memory, like playing with the music on my new I-Pod Touch that Patrick had just given me for my birthday. We had been anticipating a one-night stay in recovery, and he wanted me to have something to do. We were there for 8 days...

Perhaps the most profound memory of that morning was during the 20-minute wait of eternity, when we knew they were performing CPR, that our precious baby boy's heart had stopped and they were shocking it to start again. No one else was in the waiting room with us for a few minutes (we had an almost steady stream of Joey fans to come offer comfort and support) and Patrick and I were holding hands and trying to pray. Patrick said to me "you know he's alright." Actually I'm not confident right now. I don't know if I'll bring our baby home. "He's been baptized and confirmed. He's fine. It's us we're worried about. Not matter what happens, Joey is fine." Whoa. Now that's what it means to keep our eyes fixed on a God who loves us, in total surrender. Not that it was easy, not that I suddenly felt fine after that, but in one short moment my strong husband, just as scared as I was, kept our heads pointed in the right direction.

Well, here we are a year later. Out and about with the kiddos, playing and wrestling an ever-increasingly active and determined little boy. He looks perfect, with his bright smile, and charming demeanor. And yet as we reminisced about last year I began to wonder if I will ever really look at Joey the same. I say probably not, but that's okay with me. None of us are the same after last year, and we can thank our ROCKY for making us better!

Home again!

We were discharged late yesterday afternoon. It was simply reflux... Joey's back home and doing really well! We look forward to another surgery in a few weeks, but for now, back to status-quo.

Thanks to everyone for their prayers!

Watching, Waiting

... and sleeping? Joey is having a sleep study done today while he naps. In looking for answers to his bradycardia (normal beat but VERY slow rate) the doctors have lined up a couple of tests in an attempt to determine where these episodes are originating.

Today they have him all hooked up to watch his breathing while he sleeps. All babies (an adults for that matter) have normal brief apneic (not breathing) episodes. The real question is if there is a correlation between them and his heart slowing down. Tonight or tomorrow they may do a test to monitor brain-waves to see if there any any neurologic component like seizures. Really, they are just trying to cover all their bases.

The fact is that on Thursday he had a lot of electricity sent through his little heart for which we are eternally grateful. After such an event, however, it might have irritated his heart's normal electrical circuit, so we are waiting to see what they can do about it. In the meantime, we are not going anywhere. The doctors made it clear that this is not a new baseline, but rather something to be treated.

Happily, Joey looks great! It is ironic to watch him acting like his normal happy self even while the monitor is showing his heart acting-up. It is comforting, though, that he is eating well, interacting like normal, and I can still snuggle him. My Little Miracle!

Praying for wisdom and guidance for these wonderful docs in treating our Joey!

And the Beat Goes On...

... just in his own rhythm! Yesterday they moved Joey to the step-down unit, a very positive step towards the door! Last night, however, he started "skipping beats." While not uncommon after being defibrillated it is still not normal and may or may not lead to a problem for Joey.

Today the are monitoring him with 2 different cardiac monitors, and they switched his room to be closer to the ICU "just in case." They are waiting to ensure that all the cardiac meds he was on before are cleared from his system so as not to effect his heart rhythm and seeing if everything aligns by itself. Really, it's just a waiting game now. We know we're not going home today, but after that it depends what they are able to determine about Joey's little heartbeat.

Thanks for your thoughts and prayers, keep them coming!

Balloons

... But not the fun kind, rather the ones that do something important!

The date for Joey's next procedure is this coming Thursday, September 2nd. He's the first case of the day, 8 am, so let's pray that the doctor is a morning person! Maybe I'll bring him a cup of coffee :)

Joey will be having another cardiac catherization with balloon dilation of the aortic valve. (*whew* say that 10 times fast.) He had this done once already, although the last time was much MUCH scarier. Last time the doctor was not sure he would survive, and statistically Joey beat the odds. This time Joey is healthier, stronger, bigger. He has had time to recover from his last surgery, time to grow, and his heart is returning to it's normal size and function. This is much safer this time around, praise God!


I will admit I am a little nervous; he's still my baby. My tiny little baby. I continue to pray for grace and strength, placing him in Bigger Hands. Please remember to keep him in your prayers this week!!!
St. Joseph, pray for him!

A Boy of Surprises

Today was spent in the doctor's office. For 3 and a half hours. To be fair, I was a few minutes late thanks to traffic and poorly marked roads, but that's another story, and yall visit here to read about Joey and not about my inability to handle online map mistakes with grace and poise. Moving on.

Joey continues to keep us on our toes. Right about the time we start thinking we know what to expect he surprises us with a change. Today's, thankfully, was nothing significant.

The pressure across his pulmonary artery (PA) band was stable. Which is good news in that surgery is in the near future, but is not urgent. He is growing and his heart is working well and he will need that band taken off and that hole closed soon. But not right now. No, instead what changed over the past 3 weeks is the pressure across his aortic valve. His stenosis has progressed to the magic number at which he earns another trip to the cardiac catheterization lab. He will undergo his next balloon valvoplasty to loosen and stretch his aortic valve sometime in the next 2 weeks. (ish.) We will know the schedule sometime within the next week, and I will update as soon as possible asking for more prayers!
In simpler news, he is growing nicely! Mr. Chubby Cheeks is up to 10 lbs, 6.5 ozs! He is alert and very smiley, loves watching his sisters and is a big fan of snuggling on my chest. I am meeting with another lactation consultant to try to encourage his to latch as he seems to have given up nursing in favor of the bottle. Any nursing mama will verify how heart-wrenching that is! We have another follow-up swallow study coming up soon, which I am confident will show that his vocal fold has healed and he's ready to eat regular thinned liquids.

Pictures posted

I put up a page with hospital pictures on it. They're somewhat graphic, so I linked to it instead of embedding them.

You can also get here by clicking the link under "Pages" on the right.

Joey's pictures

More about Joseph

Our Little Man is doing well today, Praise God!

Yesterday was VERY scary for us, as he underwent a very risky procedure to correct his aortic valve stenosis. Basically, the valve that allows the blood flow to the rest of his body was very small and hardened, and they needed to open it up with a little balloon. In the adult world this is a relatively minor procedure, but when the whole heart is the size of a walnut (!) well, it is very scary. Also, he is still on the bypass machine which further complicates matters. However, once again Joey showed us what a fighter he is! The doc went in with a very serious look on his face and returned several hours later with a smile! He will face many more of these over the next few months and years. Patrick asked the doc if he had a "frequent flyer punch card" but the doc told him there was no free coffee at the end. That's okay - I'll just take my son home, thanks.

Joey's goal for today is to continue to get more fluid off his lungs and out of the rest of his body as much and as quickly as possible. Once he is stable and dry they can begin weaning from the ECMO!!! Hopefully starting tonight!!! A complication he faces right now is because of the blood thinner (Heparin) he has to be on for the machine is causing a small bleed in his brain. Right now it is very small and contained, but the sooner he can ditch the machine and heparin, the sooner they can clot. Please pray they don't get any worse in the meantime!

Patrick and I are doing okay, thanks for all who've asked. We are trying to balance our time here with Joey and going home to see the girls and sleep in a bed. It is not easy, but as with all things we take it with faith. A HUGE thanks for the phone calls and meals, and as always ESPECIALLY the prayers.
I will try to answer any questions if you are interested, and will try to continue to update as often as possible.

Thanks and God Bless,
Pat, Kate, Bella, Anastasia, and Joey

St. Joseph, pray for him!