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.

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!

Breathe In, Breathe Out

Joey is doing so much better today, Praise God! He has really bounced back well in such a short time.

This morning they took out the breathing tube - off the ventilator again! He's breathing pretty well, although a little fast likely due to extra fluid leftover from yesterday. (To raise his blood pressure they had to give him extra fluid during the recusitation.) His eyes are open, looking around, stretching and wiggling like a good little baby!

One of his previous heart medications is no longer acceptable after his arrythmia, so today's big trial is another type of heart medication. So far he has tolerated it well, cardiac-wise, but they're still watching to make sure his heart doesn't start freaking-out again. No more of that, please.

If all goes well they will talk about moving him to the step-down unit possible as soon as tomorrow. :)

My little Chubby Cheeks is eating again, also, although he's taking it slow. It is very common for kids to be a little slow in picking up eating habits after all he's been through. He is happier at least having something in his belly, understandably!

"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

HKU...

...stands for heart and kidney unit, where Joey now is. He's now out of the ICU!!! We're so excited about it, because he had to make significant progression to make it here. He now only has an NG tube for feeding and stick-on heart leads. It's amazing how empty his monitor is...only 4 lines instead of the 13 he had last week. (In fact, one of the four wasn't important enough back then so a full 10 monitors had been taken off!) He's breathing completely on his own -- no machine assist at all!

His next steps will be to continue weaning his meds, but most importantly remembering how to eat. It will be so awesome when he gets there. Obviously, he is still running the show, and everything is on his timeline, but he could potentially be released this weekend if everything goes stellarly. Saturday will be three full weeks on the inside; it would be nice to not have to extend it!

He got a suite...

More positive news today! He was moved farther from the nurses station to a room technically on the same CICU unit, but housing spill-over patients in the next ward. Basically, in this sort of intensive care, the most serious cases are right next to the nurses station for extra monitoring, so the farther you get from it, the better off you are! The new room doesn't have as many connections different life-support devices, nor is it up to the level of sterility for impromptu surgeries (like putting the ECMO in or taking it out.) So by moving him, they're saying that they don't foresee needing to use those additional devices! I know it might seem like we're grasping at straws here, but every little milestone seems humongous!

One other perk of the new room is that it has somewhat more lax rules. It has a table in it that we had lunch on today (the unit technically doesn't allow food in the patient rooms, but the unit where the spill-over is does...we went with the lax rules. :)) It also has a full-size couch, which is marginally more comfortable than the floor, but should Kate decide to stay to help nurse the little guy, she'll actually be able to sleep in something more than a recliner. Also, being off the main corridor makes the room a bit quieter, and fewer people poke their heads in...all good signs!

Speaking of feeding the little guy, he ate 10 ml of breastmilk from a bottle today! This was great news! Newborns typically have a hard time learning how to eat after being fed through the IV or feeding tube for the majority of their lives. Also, being on ECMO stresses certain neck muscles (look where those canules are inserted, and you'll see how it messes with his neck/throat) so that makes it harder to remember how to suck. On the flip side, he had a week of nursing, so simply remembering how is easier than learning for the first time like those babies whisked directly from the delivery room the the ICU. So the fact that he ate from a bottle was awesome! A baby his size on full feeds gets about 18 ml/hour, so a baby that nurses every 4 hours would get roughly 72 ml per feeding. So it was a small portion: only 1/7 of the amount he needs before he can feed completely without the feeding tube, but it's a start. They'll work on stopping the feeds before he eats to help him get hungry and then offer more and more each time.

We're doing well...let's hope that it continues to improve!

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!