Of Cones and Toes

Patrick enjoyed a routine visit to the Cardiologist this afternoon {“enjoyed” may not be the right word…but he was fairly brave and tried to curb his indignation, tears, and requests to “go back to the gold car.”}

P’s troublesome ticker looks pretty much the same as it did in July. While there is no imminent danger, we will need to do something {in coming years} to reduce the amount of blood that regurgitates into the atrium–enlarging the right side of his heart. Dr Rhee feels that a surgical procedure called a cone repair will do the trick. The idea is to move the three leaflets of the tricuspid valve up where they should be and reshape them into a cone.

Before doing a cone repair, the surgeon(s) will probably want Patrick to get older/bigger. In the meantime, they will call us in soon to do a study on his heart to see if he still has electrical pathways in his heart that could cause SVT (rapid heart rhythms). If SVT is still a potential problem, then they’ll do a low-risk catheter ablation to get rid of the SVT pathways. Both the study and the cath procedure would just be overnight procedures (so that they can monitor him after he’s been under anesthesia).

In other news, we are loving our new house (will share photos in the near future) and getting excited to meet the soon-to-be fourth member of our family. My due date is May 1 and so far the baby is healthy and whole. We had a fetal echo done in January to take a close look at his heart–it looked totally normal. The only item of not was that Patrick’s baby brother has 12 toes! The better to kick me  with, of course…

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Patrick Burrito

Sometimes Patrick’s love for his blanket combined with his love for perpetual motion results in a Patrick Burrito…

Note the heart monitor sticker peaking out of his onesie. Yeah, there was supposed to be a sensor thingy attached to that sticker, but those often came unattached for some reason. I’m sure that you can’t imagine what the reason was.

The cardiologists had Patrick on an Ambulatory Cardiac Telemetry (ACT) Monitor for 21 days so that they could make sure that his heart rhythmn is healthy now that the amiodarone has cleared out of his system. You can see the sensor battery pack by his leg below:

We were pretty sure that things went well since the only time the monitor buzzed at us was when either a) Patrick had pulled off, rubbed off, or otherwise removed one of the sensors, or b) the sensor battery was nearly dead. Yay for no “events”.

Today we saw Beth Rumack at the new Phoenix Children’s Hospital (PCH) clinic {St. Joseph’s and PCH merged, so the pediatric clinics moved to the children’s hospital}. The new facilities seemed nice and very colorful–but it sounds like we won’t need to spend much time there anyway. Patrick’s echo looked good. His right atrium is still enlarged, but it hasn’t gotten enlarger. His tricuspid valve is still leaky, but it always will be. If things continue this way, Patrick may not even need another heart catheter until young adulthood. We will keep seeing a cardiologist once every 4-5 months for now, but only 2-3 times a year will be SO nice. We are pleased with how well our little P is doing and very glad that he had the surgery when he did.

Stats:

Weight: 8.8 kg (19 lbs 6oz) – 30th percentile

Height: 2.5 feet – 50th percentile

Head Size: 90th percentile!!!

And that’s why they call him Mega Head (or at least Aunt Aubrey does).

We are told that his proportions will start to even out eventually–the Glenn procedure is still playing a large part in the crazy growth curve his head size is on. Credit for that is also due to his genetic inheritance (Patrick says, “thank you, daddy!”)

Adios Amiodarone

Patrick had an appointment with Beth at the heart center today. Gary was the unlucky one who was tasked with weighing, measuring, monitoring, and echo-ing a squirmy, opinionated 7-month-old. Gary was great. Patrick was…difficult. But they were able to get enough information to tell us that Patrick is doing well. Things look the same as last time–the tricuspid valve is pretty leaky but that’s why they did the Glenn procedure. As long as the right side of his heart holds up under the pressure from the regurgitated blood, there may not be a need for more surgery in his future. This is sort of uncharted territory so we’ll have to see how it goes, but the cardiologists seem pleased with how he is doing.

In fact, he has graduated from his amiodarone–a once daily med he has been on since he was born. Amiodarone prevents the SVT (super-high heart rate) episodes that Patrick had a couple of times as a newborn while still in the PCTICU. At this point, P has outgrown the dose he’s been on and since they have been planning to take him off of the drug anyway, it is better to do it now rather than up the dose. It will take awhile to clear from his system, so in a month or so we will start a 21-day ACT monitor again (he had one for the first couple of months last Fall). I’m not that excited for the monitor, but it will be so nice to have the peace of mind knowing that the doctors (and us parents) will be alerted if his heart does something funky. AND we are happy to have him off of one more drug. Now all he will be taking is aspirin once a day for the rest of his life (to avoid any blood clots in his heart–particularly the troublesome right side).

Patrick doesn’t need to go back to the clinic until after we’re done with the ACT monitor–so not for two months! After that we may only need to take him every 4-6 months. How rad is that?

We should be hearing from someone regarding physical therapy–Patrick  is lagging a little on some of his physical development. His sternum is wired together, and you can feel the bumps under his scar. As you can imagine, this makes tummy time a bit uncomfortable. Also, because the Glenn procedure re-routed the blood from his upper-body, a natural bi-product is that his head has gotten bigger (in relation to the growth of the rest of his body). With his head so heavy, he hasn’t quite gotten sturdy in the sitting position. He’s a strong kid, though, and he’ll catch up. He just wants to skip sitting and crawling and go to walking–if he had his way we’d have him standing, jumping, or walking (assisted) ALL the time.

These photos are from his last regular pediatrician appointment–he’s getting caught up on the immunizations we had to postpone during the pre and post-surgery time period. (Tia, Patrick’s nanny, was nice enough to come with me to the appointment. Six needles…three in each leg! He was a trooper, though.)

Leaky

I’ve never seen Patrick SO happy to be back home, but after all of his tests at the Heart Center yesterday afternoon Patrick looked like he could’ve kissed the living room floor upon returning to familiar surroundings. One of his favorite things to watch is the ceiling fan, and he was full of smiles for Mr. Fan. Next he was thrilled to sit in his swing again, and he sat and talked to the little lambs on the swing mobile and smiled at his own reflection in the mirror above the swing. He sure seems to like the handsome dude that looks back at him!

Although he was pretty unhappy about being held down for a chest x-ray, echo, and EKG–not to mention having blood drawn from his little arm–for the most part Patrick was smiley and friendly to the doctors and nurses. Even while the cardiologists were giving us some serious news, Patrick grinned and grinned at Doctor Rhee. Braden and I were not quite so cheerful about the doctors’ report that Patrick’s valve has gotten very, very leaky. Right now the x-ray shows that his heart has not become much more enlarged, but the echo showed that his tricuspid valve is allowing much more blood to leak back into the atrium. His heart is working SUPER hard, and it is only a matter of time before his atrium becomes so enlarged that his heart fails.

Fortunately, Patrick has been eating well and gaining weight, because it looks like the doctors will need to intervene earlier than we had planned. The bloodwork they ordered will tell us how far into heart failure he is, and in the next couple of weeks they will probably do a heart catheter to get a better look at his valve. On Tuesdays the doctors all meet to discuss certain cases and Patrick is on the docket for next Tuesday. Hopefully they’ll have a plan for us after that. Beth indicated that once they decide that he needs surgery, it will probably be about a month before the procedure happens.

For now we are watching for signs of heart failure like vomiting, appetite issues, or labored breathing. Our travel plans are on hold and we are to continue our germaphobic precautions. Airplane rides are definitely out of the question, and even road tripping may be kiboshed so that we stay close to Patrick’s medical team.

Ten Pounder

Patrick saw his cardiologist, Beth Rumack, last Thursday for a routine checkup. He weighed in at about 10 pounds!

Left: 10 Days Old, Right: 6½ Weeks Old

He has been growing steadily and according to the chest x-ray and echo done on Sept. 30th, his heart has not really become any more enlarged than it was at discharge. Also, the tests showed that his ASD (a hole between the right and left sides of his heart) has actually closed up a bit on it’s own. This might mean that the ASD could be repaired via a heart catheter rather than open heart surgery–which I think could buy us more time before the tricuspid valve repair is necessary.

Patrick had occasionally been trying to sleep longer between nighttime snacks, and Beth told us that we could start letting him do so. She told us that as long as he is getting about 20 ounces of breastmilk per day then he should be fine sleeping through the night. At the time Patrick was only eating about 15-16 ounces a day, but once I started letting him go longer between feeds at night, he really picked up his game. Over the last few days, he increased his intake from about 18 ounces to 24 ounces. So far he has still been waking up once or twice during the night to eat (most consistently at 1 or 2 am), but even that has been so nice for me (he was eating every three hours before). Yay for more sleep! I went from a total of 4-5 hours to a total of  nearly 6-7 hours of sleep each night. Amazing.

Patrick literally changes every day. He is developing so quickly, and we are having a ton of fun with him. He has become a lot more smiley and talkative with his little Patrick sounds.

At 7½ weeks old, Patrick likes to:

  • Keep his legs and arms in constant motion (often in his sleep as well)
  • Kick with his right leg more than his left
  • Have his hands balled up in fists still (although we are starting to see him keep them open occasionally)
  • Grip things in his fist (i.e. our fingers, toys, hair–unluckily for Braden’s chest hair, etc.)
  • Pee in the bathtub
  • Poop on Daddy
  • Hang out on the changing table. He has come to appreciate diaper changes more (he HATED them as a newborn) and he really likes to look around at his toys and monsters that hang by the changing pad. Some of our best conversations take place there–he likes to be sung to, talked to, and to learn new tricks while he’s laying there.
  • Hold his head up. Patrick has the head control of a 3 or 4 month-old (as per his pediatrician).
  • Put a halt to ALL other activities in order to concentrate on going #2.
  • Hold Daddy’s thumb while being bottle-fed
  • Look at himself in his crib mirror and the mirror above his swing
  • Sit in his swing, whether it is moving or not. And he loves to sleep there.
  • Watch the lights on his activity play-mat
  • Follow toys with his eyes when we move them back and forth in front of his face
  • Fight sleep with all of his might
  • Ride in his baby bjorn carrier
  • Take his heart medicine–seriously, he thinks it is super tasty and he’s sad when his daily dose is gone
  • Video chat with his grandparents
  • Sleep on Dad…

Patrick

I am finally snagging a chance to post on here. Thank you everyone for the amazing support and messages we have been receiving! While I have not been able to respond to many, I have read every single email, facebook comment, text message, and carrier pigeon correspondence. Patrick has quite the fan base and we are SO appreciative.

The main things they are watching with Patrick are his heart rate and oxygen saturation levels. There is a blood vessel called the ductus arteriosus that takes blood to the lungs while the baby is growing in the womb. After birth, the vessel closes up and the pulmonary artery takes over the task of taking blood to the lungs where they now become enriched with oxygen. Because Patrick’s pulmonary artery seemed compromised due to the problems with his heart, the doctors have been medicating Patrick with prostaglandin(s) to temporarily keep his patent ductus arteriosus (PDA) open. This allowed the PDA to help compensate for the under-developed pulmonary artery by keeping blood flow to the lungs and, in the long run, sending oxygen throughout Patrick’s little body.

This morning the cardiology team conferenced over Patrick’s case to discuss a plan of attack. From what they saw in Patrick’s echo, his pulmonary artery is working a little more than they may have initially thought it would. So this morning they took him off of the medication to see how he does without the PDA. In the morning they will do another echo to see if the PDA has closed up and check things out. So far he his oxygen saturation level has stayed in a decent range and a fun side benefit of going off the meds is that Patrick is able to be more alert. He can actually open his eyes and keep them open for awhile, which we of course think is amazing and so stinking cute. Pretty much everything he does is awesome in our book.

Depending on how things go with this PDA experiment, and with anything else that comes up in the next few days (or weeks), the doctors have a few options they are considering. I will now make a lame attempt to tell you about the procedures that are on the table. Heart Moms and Dads: please feel free to correct me where I misunderstand and misinform.

One route would be the Modified Blalock-Taussig Shunt–which would be a tube that they insert between the pulmonary artery and a branch of the aorta. This would be a temporary fix to make sure blood gets to Patrick’s lungs. Eventually Patrick would need more surgery for a longer-lasting fix.

Another possible procedure is a heart catheter. I am not entirely sure if this is just something that they would use to learn more about how his heart is working, but the impression that I got was that they can insert a balloon into Patrick’s heart and then put a little air in the balloon to open up his pulmonary artery a little more. They would go in through his leg/groin and up into his heart.

There is a third option that they’ve mentioned, but I don’t remember for certain what it was called. I think it is the Starnes Procedure. I need to find out more about that one–I’m sure it’s been explained to us but not necessarily in connection with the name of the procedure.

The doctors seem to anticipate that Patrick will need the Glenn Procedure eventually, regardless of what they do for a temporary solution right now. I *think* that the Glenn is either similar too or interchangeable/combined with the Fontan (re-routing the plumbing of the heart to skip Patrick’s faulty tricuspid valve).

There is still a chance that Patrick will not need surgery immediately, and we can take him home and grow him before the Glenn Procedure is absolutely necessary.

Hopefully I’ll be able to get on here more often now. Braden has been great about updating Facebook, I’ll try to get some photos and videos on here as well.