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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Steady as He Grows

Patrick had a cardiology check-up yesterday and Dr. Rhee said that while his heart is still enlarged, it has not become any worse. If his heart stays as it is, he may not require any future open-heart interventions!

It is likely that P will need a couple of less-invasive procedures in the cath lab (one to test the electrical pathways again and make sure he’s not in danger of an arrhythmia, and one to further close his ASD). But we can handle quick over-nighters at the hospital for these types of procedures. We’re so grateful things are holding steady!

I would upload a photo of P wearing nothing but a diaper, hospital anklet, and sandals in the exam room (playing with cars of course). But I don’t have my phone  (which contains the photos)with me, so instead here’s one that Braden took on Monday (also with cars). You’ll just have to imagine that you can see his pot-belly and chicken legs ♥

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.)

Six Months + Cardiac Follow-Up

A week ago our baby boy crossed over to the second half of his first year. What the?!
Here he is in all his 6-month glory:

And a couple of days later…

Also, we had an appointment at the heart center this morning. Patrick is doing well and no longer has any restrictions. Just regular baby precautions. Now we need to help him catch up on his tummy-time and sitting skills. In a couple of months he may get to quite his daily meds. And stay tuned because we get to start solid foods this week!

Our Heart Boys

Patrick had a follow-up appointment at the heart center this morning and they were pleased with how well he is doing post-op. He has gained weight (tipping the scales at 15 lbs 1 ounce) and his “zipper” is healing nicely. Patrick’s head was in the 40th percentile before surgery and despite the amount of blood that backs up in a baby’s head after the Glenn procedure, he is still only up to the 50th percentile for head size. That means he only has “Glenn head” minimally.

Patrick’s cousin, Jeremiah,  is settled at Primary Children’s Medical Center. His lungs are stronger than they had initially thought and they have been talking about ECMO (a machine that will put oxygen in his blood) and surgery today. From what I have heard, they have had some ups and downs, but Jeremiah continues to fight and to surpass expectations. Thanks everyone for your prayers for him. Be strong baby J, we love you!

Jeremiah

My nephew, Jeremiah, was born this morning and is in the NICU. He is a heart baby too, he has transposition of the great arteries (TGA) and a ventricular septal defect (VSD). To further complicate things, he has a congenital diaphragmatic hernia (CDH).

He was only expected to live two hours at best but surpassed the two-hour mark hours ago. We are praying for a miracle.

Jeremiah’s mom, Heidi, is recovering, but to read more information on his diagnosis pre-birth you can visit Heidi’s blog: Gibbering Madness.

My mom sent this update earlier this afternoon:

Hi All,

I just got back from University Hospital. Bryce got to Utah yesterday around 4 p.m., and by 8 p.m. Heidi was in labor. They went to the hospital around 3 a.m., and Jeremiah was born at 4:20 a.m. by C-section. He weighs 7 lb 1 oz and has quite a bit of shimmery light brown hair—that looks curly.

He is in the NICU and has already lived four times longer than they had been told to anticipate. The doctors there are so good at communicating with Bryce. They have spent most of this time trying to get the carbon dioxide out of Jeremiah. It can be as huge of a problem as too little oxygen can. His carbon dioxide numbers have been going down all morning—which is what they’ve been hoping would happen. At one point they were going to use a surfactant to try to get his lungs to “unstickify” and open up more, but when we left, they had decided not to do the surfactant.  They didn’t want to run the risk of making a hole in his lung with too much pressure if they didn’t have to do it.  They have two pulse ox machines going on Jeremiah that report his oxygenation both at the feet and at the top of his body. He is generally around 70% which is good considering his heart has the pulmony artery and the aorta connected opposite of where they should be. He has a large hole between left and right—which is usually problematic. In Jeremiah’s case, it is helping his blood to mix and making it possible for a little more oxygenated blood to get pumped out.  They have Jeremiah being cooled to help prevent brain damage—and maybe other reasons, too. His intubation took 10 minutes, so there is a possibility of brain damage. The doctors said he responded very quickly once they got the tubes in, and they thought with the cooling, his brain might be OK.

I know I was introduced to lots of doctors in the NICU, but I remember no names or titles. Bigwig doc from Primary Children’s was there observing Jeremiah. He was working with Jeremiah’s two in-the-room doctors. They would explain every move to Bryce—who didn’t leave unless they asked him to (during shift change and reports). Bigwig doc was going to call bigwig heart surgeon to discuss the possibility of doing heart surgery today and getting Jeremiah onto ECMO after the surgery. That was never offered as a remote possibility prior to today, so even that possibility is nice to cling to. He still might not make it, but there is that remote chance.  Oh, and by the way, his feet are just fine—not clubbed as they had been told they were. Miracles do happen.

Greg took a couple of pics on his new cell phone while we were at the hospital. I will get Danica to email them to me and I’ll include them here.

Heidi’s Mom has been in California helping with another grandbaby that was born. She hopped onto an earlier flight and should be back in town by 1:30 this afternoon.

As we were leaving the hospital around 11 a.m., Heidi was begging to get up and go see her baby. They had taken her there once in her hospital bed on the way to her room. Her feeling has now returned to her feet, and she thought they might let her go spent 5 minutes or so in NICU. I hope they did.

Heidi and Bryce are both exhausted, so texting or email would probably be the kindest way to communicate with them.  Heidi is in room 2305 at University Hospital. I would guess she’ll be there for 3-5 days, so that lets me know that I’m going to be running back and forth with Isaiah whenever possible.

Thank you to all of you who have been praying for our family!

Love,

Colleen

Postponed

We were nervous about Patrick having surgery with the congestion and cough he has had this week, but his lungs have been clear so on Tuesday they cleared him for surgery. This morning, however, once the anesthesiologist checked him out and discussed it with the surgeon, Dr. Nigro, they recommended that we postpone. We want it to be as safe as possible, so it makes sense to wait until his cold clears up. Coughing and increased pressure on the lungs are definitely not what we want for Patrick while he recovers from having his pulmonary artery (which takes blood to the lungs) messed with, among other things.

We have an appointment to meet with Beth on Tuesday, the 11th and we’ll go from there to reschedule. It’s a bit of a roller coaster but this will be best for Patrick. It has been awesome to have such an outpouring of support–thanks everyone!

Here are some photos from Braden’s ipod–taken in ped’s pre-op and the O.R. waiting area this morning.

It’s a Date

We met with Patrick’s cardiothoracic surgeon, Dr. Nigro, and Beth on Friday to discuss surgery. We were relieved to find out that Patrick’s surgery is not an emergency and can wait until after the holidays. Patrick is scheduled for a tricuspid valve repair and possible Glenn on January 6th, 2011.

The valve repair requires open-heart surgery. Once they look at and work on the tricuspid valve they will decide if Patrick also needs the Glenn Procedure to take some pressure off of the right side of his heart. The Glenn would connect the superior vena cava (the vessel that brings blood from the upper body to the heart) directly to the pulmonary artery (which normally takes oxygen-poor blood from the heart to the lungs), skipping the right side of the heart entirely.

Once Patrick has gone under anesthesia, he will get a breathing tube and an echo tube. They will make an incision in his chest and open the bone.

He will be on a heart-lung machine–his heart will be asleep while they assess and repair the valve as well as possible. Then they will decide if we need the Glenn. They will wake up Patrick’s heart and, if the Glenn is needed, they will do that procedure. They will also patch up the ASD (hole between the right and left atriums), although they may leave a little bit of a hole to relieve pressure.

Patrick will be in the PCTICU for 7-10 days. Recovery is straight-forward after he leaves the hospital. They expect him to rebound quickly. Risks are minimal–Dr. Nigro estimated a risk factor of 1-2% for major complications. Patrick will need a blood transfusion, so Braden and I had bloodwork done to see if we are a match to donate. He’ll need 3 units of FFP & platelets. We are waiting for the hospital to contact us with the results of our bloodwork, and to let us know what Patrick’s blood type is.

We feel very blessed to not be spending the holidays at the hospital. AND we were given clearance to drive to Southern California for Christmas! We are looking forward to taking our mind off things for a bit as we vacation both in California and then with my side of the family who are visiting Arizona after Christmas. Patrick has many aunts, uncles, cousins and a grandpa to meet!

Upcoming Cardiac Catheterization

Patrick has been scheduled for cardiac catheterization on December 8th at 9:30am. We will check him in at 7:30am that morning and he’ll be kept overnight after the procedure (probably discharged by lunchtime on the 9th). Before the procedure they will give him a full check-up to clear him for the catheter. Patrick will go under general anesthesia for this event–which sounds better to me than trying to keep him calm and still. Here is a little description of the procedure:


I was relieved to learn that Patrick won’t be required to fast for an inordinate amount of time or anything. However, he is not to have any breastmilk/formula after 3am on the 8th, but can continue drinking Pedialyte, water, or diluted apple juice between 3am-5:30am. Past 5:30 he is not to eat or drink until he wakes up following catheterization.
After this they will talk to us about when surgery will happen and what they plan to do based on what they see in his messed-up little heart. If there are things that you think we should ask beforehand about the heart catheter, or about the surgery in general, let us know.