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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3 thoughts on “Patrick Burrito

  1. Hurrah on all accounts! I am so thankful he’s healthy and growing so well. Great news that his heart is doing well without the meds. It’s been a rollercoaster ride with lots of deep concerns–you’ve done very well with coping! I’m so glad you get to relax a bit and just enjoy little Patrick–who is not so little!

  2. HI
    My name is Jenna and I came across your site. Patrick is an amazing, courageous, strong, and determined fighter. U are a brave warrior, smilen champ, inspirational hero. that is so awesome that he is healthy and his heart is doing so well. I was born with a rare life threatening disease. I love it when people sign my guestbook. http://www.miraclechamp.webs.com

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