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!”)

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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!

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.

In Good Company

It was so nice to get away for a few days and have tons of family to distract or encourage us, depending on the moment. Thanks go out to my Mom & Dad for all of their efforts for our family reunion and to our other family  members who planned activities and special occasions so that we could be there.

I mentioned a 17-month-old girl with Ebstein’s in a previous post–we have since heard from her family, the Lowry’s. Although they are from Prescott, AZ, we were actually able to meet up with them while we were in Utah this past weekend. It was awesome to meet them and to see their cute little girl running around and happy in spite of her first surgery (primarily a valve repair, I believe) on June 10th. They were hoping that additional procedures/surgeries will not be needed, but based on her follow-up visit it sounds like she might need the Glenn procedure as well. We are definitely hoping for the best for them!

The Lowry’s are pretty much great all around. They took time away from their family festivities to talk with us. It was nice to get a better idea of what to expect, particularly everyday things we will need to do for our son. Mostly, though, we appreciated the meet-up because it’s good to remember that we are not the only ones that this has happened to. It’s amazing to have such a support network, including the Lowry’s and other “heart families” who we will probably meet and/or interact with through hospital visits and the Eller Heart Family Council.

Things we have learned from the Lowry’s include:

  • Heart babies tend to have a difficult time putting on weight because their little hearts are working so hard. I will likely need to add formula to breast-milk (if we want him to have breast-milk, which we do) and bottle-feed in order to keep track of Pedro’s caloric intake.
  • When Pedro comes home with us, he will probably have a monitor that alerts us if his oxygen level drops. For the Lowry’s this usually happened during the night when the monitor got kicked off or their baby relaxed and her ox naturally dropped. We weren’t planning to get any sleep anyway, though, right? (I say “we”, but who am I kidding? We all know that Braden has slept through louder things.)
  • Some heart babies take Viagra in order to help their blood flow
  • The Mayo Clinic a youtube video about Ebstein’s Anomaly:

All Roads Lead to Nigro

Yesterday I had a consultation with Dr. Jedeikin from the Arizona Pediatric Cardiology group (affiliated with the Phoenix Children’s Hospital) for a second opinion/option kind of thing. We were tempted to cancel the appointment because we feel so good about the St. Joe’s group, but we decided that we should see what Dr. Jedeikin  had to say. You know, due diligence and everything.

Dr. Jedeikin seems really great. (And I’m not just saying that because I like his South African accent…) He is very, very passionate about hearts and cardiology. He did a fetal echo and went over Ebstein’s Anomaly with me again. I always learn new things about the heart, and I came away in awe of all of the many facets of a human heart–how do all of those parts work perfectly in most people?!

Dr. Jedeikin’s assessment and approach to Pedro’s case is pretty much the same as those we’ve heard from the other doctors involved. He hopes that immediate surgery will not be necessary, and has pretty much the same plan for monitoring our little guy’s heart–both pre and post delivery. He had good things to say about the Phoenix Children’s Hospital (PCH), but apparently he could work with us even if we choose St. Joe’s for delivery. He encouraged me to deliver at St. Joe’s since that is where my new OB delivers (rather than switch OB’s again in order to deliver at the hospital near PCH). From this I concluded that both hospitals are a good choice, and we just need to pick the one that we feel most comfortable with. They both have Level 3 NICU’s.

Probably the most interesting/encouraging part of this consultation was that Dr. Jedeikin would involve Dr. Nigro for the surgery aspect. Dr. Nigro seems to be the go-to guy for surgery in these cases, regardless of which hospital we go to.

So, since:

  1. the hospitals are comparable
  2. we get Dr. Nigro either way
  3. the Pediatric Cardiologists are excellent either way

…we are free to choose the hospital and Pediatric Cardiologist(s)  that we feel the best about. We still appreciate that at St. Joe’s I would deliver and recover at the same hospital where Pedro would be in the NICU. We also feel like the program with the St. Joe’s cardiology group is a better fit for us–much more supportive and user-friendly. Also, once you meet Beth, the nurse practitioner, it’s a no-brainer. She is off-the-hook amazing.

Although it did not change our mind, I’m really glad I went to see Dr. Jedeikin. Now we can feel even more confident about our decisions, and I appreciated learning more about Pedro’s heart. Here are a few things I now understand after meeting with him:

  • The tricuspid valve is made up of three leaflets, one of them is the ‘Septal leaflet.’ Pedro’s septal leaflet is dysplastic–which means it is gnarly, thickened and crumply. The other two leaflets are doing all of the work to open and close the valve as best they can–which is why one of the leaflets is longer and floppier, it’s trying to cover the Septal leaflet’s territory too.
  • Dr. Jedeikin did not think that Pedro’s Septal Leaflet would be fixable because it is so dysplastic.
  • If surgery does become necessary, it is possible that they would move the leaflets closer together so that the functional leaflets can adequately close the valve with each heartbeat.
  • He didn’t go into all of the details, but if it becomes necessary to surgically re-route Pedro’s heart so that it operates with a single ventricle scenario (not preferable), there are a few different procedures:

Blalock-Tuassig Shunt

Starnes Procedure

Glenn Procedure

Fontan Procedure

{Pedro could need all, none, or some combination of the procedures. We have heard a little about these procedures before, but had not learned all of the names yet. I’ll activate hyperlinks if I find good descriptions for them.}

Oh and, Pedro’s new trick of the day was rolling. The sonnographer laughed with me this time when Pedro would roll away while they were trying to record his heart. Then he would roll back and punch the ultrasound wand. He definitely has a little personality already ♥