"Rocky Did it Again!"

So we got here to Children's at about 7 this morning to a sea of smiles. Everyone thought Joey was looking good and expected him to have a relatively uneventful cardiac cath. We met our old doctor, Dr. Kanter, who did his first cath when it was a much more dangerous procedure. Everything looked good, and the only problem is that he was starting to get a little hungry.

We were allowed back into the cath room, where the put a mask over his face with anesthesia. After he fell asleep, we were able to kiss him quickly and then head out to the waiting room. The nurse came out after about an hour of an expected three-hour procedure. He was all smiles and said that everything was going well, and they were looking around. (Like Kate mentioned yesterday, they put little sensors up his arteries and veins to see size and pressure.) He was doing well and they were going to start ballooning soon.

About 40 minutes later, Dr. Su, who is an attending (boss) up in the CICU, came by. We knew her well from Joey's last stay in the CICU. She saw us in the waiting room and asked us what was wrong. We had no clue at this time, but Joey had coded. (In other words, his blood pressure dropped to 20/10, and they needed an immediate team of doctors to intervene.) She had gotten a page about a code in the cath lab and came down to see who it was--she was just as amazed as we were.

Not more than a minute or two later, the nurse came back in with a much more somber face, and said that Joey had ventricular fibrillation, which is a fatal heart rhythm, so they had to shock him (think the metal paddles on ER shows up against his chest with a loud "clear!", except baby sized...) and were performing CPR on him. He also said that they were preparing to put him on ECMO (that whole heart-lung bypass thing) again. As he mentioned that, we saw a few techs quickly wheeling the large machine into the unit. Soon thereafter, someone came running in with a red rubbermaid cooler, which is used to carry blood for transfusions or ECMO. Returning to ECMO would not be a good thing for Joey, since the last time he was on it, they had to ligate one of his jugular veins, so if they were to do it again, they would have to go in through his chest. So it would be a major procedure.

We were obviously shaken...I'm not sure anything anyone could have said would have taken us aback more. We were both crying and just trying to make sense of this "routine" balloon procedure and the fact that our baby was barely hanging onto life. We were blessed by the knowledge that the best doctors available were working on him, and everyone was quite reassuring.

The nurse came out to say that he had a normal rhythm again, but his heart was too slow... They put an external pacemaker in him, which means that the power source is outside of his body, with just a wire going in, and that was making his heart beat at a normal speed. They were going to hold off on the ECMO for the time being, but it was still serious. There were a few hugs, and he apologized for tearing up in front of us.

Part of the code team that is called for the cardiac cath is an emergency echo-cardiogram. (This is the ultrasound machine that gives pictures of his heart) Providentially enough, it was our usual cardiologist, Dr. Heath (who we love as well) who was on call. The ballooning had been really successful, and the pressure had dropped significantly. This was great news, because the balloon was a necessary procedure for Joey...there weren't any good alternatives. If it hadn't gone well, or if he had coded before the balloon, they would have waited a couple of days for him to stabilize and then done it again. None of us needed the stress of having to go through a second cath in just a few days...

Dr. Kanter came in and talked a bit with us, and assured us of a few things:

• The vfib was directly caused by the ballooning procedure. There is no increased risk of the same thing happening, say, in 2 weeks when he's at home and his sister runs at him at full speed screaming... Likewise, there's little chance of it happening again here in the hospital.
  
• It was likely caused either by the valve getting stuck open briefly, in which case the heart cannot push blood throughout the body, or by a small clot breaking off during the balloon and briefly blocking the cardiac artery.
• Through medicine, CPR, and the pacemaker, his blood never stopped flowing, and the blood pressure only dropped to such a critical point for a few seconds. Because of this, he should have no permanent damage from the incident.
  
• His heart was beating on its own. They weren't giving him any meds at all to help the beat and they were no longer using the pacemaker. He was stable.
• He was going to be admitted to the CICU, where he'd be monitored for a while to make sure he was doing alright.

They took the cooler of blood back to the blood bank, and we both sighed in relief. No ECMO.

The social worker who we met last time we were here came running down to see how we were doing. We chatted about his condition with her until it was time for him to be wheeled up to the CICU. We followed the bed and got up to the third floor right at 12nn. Once a week, Thursdays at noon, they have mass in the "chapel" next to the CICU. We went in and had probably our most distracted mass without kids in ages...

Kate's dad was waiting in the waiting room when we got out of mass. He had come for his prior surgery and cath, but since this one was "routine", he skipped it. As soon as he got our text, he left work and made it down here quickly. We later chastised Joey...there had to be better ways to get his Papa to the hospital for the procedure.

So that brings us to now... He's in his room...looking very peaceful. He still has tons of lines and monitors going everywhere, but his heart is doing the work itself. Later they will wean him off of the ventilator and let him wake up. If he proceeds well with this, he might be discharged in just a few days.

So our priest, Fr. Kelly, who baptized Joey on the day he was admitted, has a nickname for him: Rocky. Joey just keeps fighting as much as he can. When we talked with Fr. Kelly today, he exclaimed, "Rocky did it again!" Which just about sums this whole thing up...


Thanks for your consistent prayers!
Pat

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.

Taking his sweet time

Hi Yall,

Joseph is doing well, progressing slowly but steadily.  Apparently he must've been reading Aesop, cuz he's going "slow and steady to win the race."  At least, that's how is it right now.  We've stopped pretending to guess about tomorrow.

Last week he was showing off, breathing over the ventilator and keeping all his vital signs strong.  They decided to extubate (remove the breathing tube).  Unfortunately he changed his mind right after that and started struggling a lot.  When his blood gasses started showing some trouble they reintubated.  He of course immediately improved. Stubborn little guy. 

They strongly suspect it had a lot to do with drug withdrawal. See, to manage pain and sedation the little guy has been on heavy narcotics for half his life!  (I knew 50 year olds who could say that, but a 3 week old???)  They weaned him very fast from the narcotics and gave him a medication (methadone) to ease that transition, but between the 2 meds in his system he ended up a little sleepy.  They held a dose to help him wake up and when they took the breathing tube out the withdrawal symptoms caught up with him.  Despite all the tubes and wires and fluid, THIS was the worst and hardest thing I have seen so far. My heart broke for the little guy, but they gave him some more meds, balanced him out, and he calmed down.  Plus, he had breathing help again.

He's right back to breathing over the ventilator, opening his eyes, grabbing hands, following voices with his eyes.  He watches the flashing lights on the IV pump and wakes up every time Daddy talks.  This time, however, they are taking things a little slower.  He's on the medication to help withdrawal symptoms, plus some extra Lasix to squeeze out extra fluid off his lungs.  (the vent pushes air in by pressure which promotes a build-up of fluid in the lungs, which makes breathing harder.  It's the biggest obstacle to removing the vent.)   *maybe* he will be ready Tues to try again?

So far everything heart-related looks much better - just like we all had hoped!  If he continues to do well there won't be any other heart surgery for a few months.   Pat started a blog about all things Joey, for any who are interested in keeping up with the updates.

Keep those prayers coming - they are such a source of strength for all of us!

God Bless,
Pat, Kate and family

http://joeytramma.blogspot.com

http://lavitabella-tramma.blogspot.com

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

Yay Joey!

This chapter in our story is titled "Joey and his Rocky Balboa Heart"

Joseph is completely OFF the bypass (ECMO) machine!!! The weaned him gradually friday night and he tolerated well, and yesterday he maintained well on the lowest setting. Yesterday afternoon they ran the normal "clamping test" during which they turned it off completely and took at echocardiogram of his heart, watching blood flow and pressure build-up through his valves. Everything looked good, so they took the cannulas OUT! Joey maintained good vital signs, good blood flow, good everything!!! A result of this was having to ligate (close off) one of the veins in his neck they had used for the ECMO cannula, but his body will form new pathways for bloodflow. (Isn't the body amazing???)

They will not make any definitive decisions about today until later, but they'll discuss removing the paralyzing medicine so he can start to move a very little and open his eyes and try to take breaths. He is still on the ventilator, but in another day they hope to wean that, too! It's a very gradual process, so as not to stress out his body too much. We want to see him slowly take over at a pace he can handle.

Keep those prayers going, including one of thanksgiving today~

Thanks and God Bless,
Kate, Pat, and Joey

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!