Monthly Archives: February 2015

Croup Doggy Dog

I have to say, Nolan really enjoys heart month…he enjoys February so much that he decides to visit his friends at Levine Children’s Hospital with a visit to the E.R.  Happened last year due to low O2 sats caused by ear infections…on Sunday he decided to make it two years in a row.

Let’s back up a little bit: the crud has been going through our house Old Testament plague-style…you know how it is when you have young kids.  One gets sick and then it’s like mass pandemic in your own home.  Our oldest had a bout of strep throat a few weeks ago and then eventually I caught one of those gross, phlegmy colds (which I seem to now get like every 4 weeks or so).  We tried REALLY hard to keep Nolan from getting sick, so it was lots of hand washing and hand sanitizer and things seemed to be going ok.  Well the other night I was doing a late feed on Nolan and he started coughing…except it was this weird cough…like a seal.  Yes, like “hork hork hork” kinda seal.  It gave me some pause and I stood there in his room keeping an eye on him, but it didn’t seem to bother him too much and when he was awake, he was his usual self, no coughing.

So on Saturday, for Valentine’s Day we had some friends over the house and it was a great night…we had a blast and Nolan enjoyed himself and then went to bed easily.  At 5am Sunday morning I awoke to his aquarium-style seal show, except this time it lasted a lot longer and he was sounding very agitated.  I picked him up and took him into the bathroom to check for the tell-tale respiratory issues (blue nail beds, feet, lips, etc), but alas everything looked fine.  But he was breathing a little fast and wouldn’t calm down or stop coughing.  At this point my wife was up too and trying to help calm him down while we hooked him up to his O2 sat monitor.  It showed a pretty high heart rate and sats in the low to mid 70’s, which is below his typical mid-80’s.  Our local hospital system has a handy phone app where you can check operating hours and wait times, and I checked to see if the Pediatric Urgent Care nearby was open, but it wasn’t slated to open until 10am.  So we had a choice to make: do we wait it out until 10?  Do we take him to the regular 24-hour urgent care or local ER (where we’d get the “What the heck is HLHS?” question)?  Or do we just take him to Levine Children’s Hospital’s ER?  We decided on the latter, so I got changed and put his car seat in my car.  When I got back inside, Nolan was dressed and wearing his coat and hat…and go figure…Nolan was happy as could be.  Little stinker!

So off we went, better safe than sorry.  On the way there I called his cardiologist’s office…I knew no one would be there but that I would be routed to an after-hours operator.  I gave him the run-down and said to just pass along the word to the cardiologist on-call and they could call me if they wanted.  I just like them to be aware when Nolan is about to go to the ER.  You wouldn’t have known Nolan was sick because he was in the back just talking and laughing and being a ham.  We got to the ER at Levine Children’s Hospital and luckily were the only people in the waiting area (thank God).  We were greeted very warmly by the front desk person and were called immediately back.  The nurse took Nolan’s vitals and was VERY sweet to him.  By this point I had Nolan’s fav show (Yo Gabba Gabba) loaded up on my phone to keep him calm and the nurse was just chatting with him about DJ Lance, and Brobee, and all the other characters on the show, which made Nolan (and me) happy.  The Charge Nurse came in to introduce herself and let us know that it was currently shift change for the physicians, but they would be in as soon as possible.  I really appreciated that communication.  So we hung out and watched more Yo Gabba Gabba:

CroupDoggyDog

Bill, Nolan’s RN for the morning, came in to get Nolan situated and comfortable: he was really friendly and attentive and kept us updated on everything.  Eventually three physicians came in to see him over the course of probably the next 30 minutes.  They were all really awesome: the first physician said it sounded like he had croup, but that since she couldn’t hear him cough she wasn’t 100% sure.  Luckily I told her I had a video of Nolan coughing so she waited patiently while I pried my phone away from Nolan and played the video…immediately she knew it was croup.  She said another doctor would come in just to be sure.  The next doctor was named Dr. Magill and she was incredible: you could tell she took the time to review Nolan’s medical record. She knew his physician, knew his ideal O2 sat levels, and knew about his previous ER visits.  We discussed, in particular, his visit 2 Novembers ago when he had some fluid on the lungs.  I told her that this bout of illness was way different from that and he was nowhere near that level of sick.  She listened patiently to me and definitely took into account my thoughts on it (Which I really appreciated) and said she just asked because she was trying to determine whether or not to get Nolan a chest x-ray just in case.  She felt, though, that it would be best not to agitate him and passed on the x-ray.  While Nolan didn’t acknowledge it or realize it, I KNOW he appreciated that too!  She was really sweet and attentive to Nolan as she checked him out, even letting him play with this light-up bird she had on her stethoscope.  Dr. Magill then explained what croup was (a viral condition that causes inflammation of the upper airways) and ordered some tylenol for a little bit of fever and a steroid to help relax some inflammation and help with the cough.

The third doctor came in and was just as sweet.  She explained that the steroid was long-acting and he would only need one dose: by the time it wore off he would be past the worst of things anyway.  She recommended a vaporizer if we had one but otherwise was ready to discharge us due to Nolan’s really good vitals.  I mean just LOOK at those sats!

HighSats

As we packed up to head back home, Bill returned and helped me get Nolan situation.  He reviewed more info about croup with me and some more discharge instructions.  The Charge Nurse also came with some stickers for Nolan and his brothers.  As we walked out of there together, Nolan was in a happy mood and so was I.  It was nice not to be admitted for something this time around, and we managed to get home just before 9am.

I say this all the time and can’t say it enough: Levine Children’s Hospital is the cream of the crop…but this visit to their ER was just exceptional.  It seemed like everyone there made it an absolute priority to make us comfortable and to make sure Nolan was enjoying his short stay.  I know that waking up at 5am and making a trip to the ER was not an ideal way to spend my Sunday morning, but it was beyond what I could imagine.  Nolan is doing quite well now: the meds helped a great deal and the vaporizer is helping too…we couldn’t have done it without that awesome LCH staff!  Thanks guys!

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Let’s Hear it for Charlotte!

Happy CHD Awareness Week, friends!  I hope everyone is doing their part to make people aware of CHDs and fight for more research and funding.  I wanted to take a moment and brag on the city of Charlotte, which has been home to some amazing people and providers that further the cause of CHD Awareness:

Camp Luck Conference

As I mentioned in my last entry I had the awesome opportunity to participate in the 5th Annual Camp Luck Conference on February 7th (I was even a speaker too!)

CampLuckConference

It was a really awesome time as over 90 people registered for this full-day conference to learn about CHDs.  I got the chance to see lots of friends and even meet some new people.  My son’s Cardiologist, Dr. Sliz gave a really wonderful presentation about CHD Kids and Sports:

Sliz

It was really great how he broke down the suggested types of competitive sports for each kind of CHD.  I’m hoping to flesh out a blog post for another time based upon his presentation, so look out for that!

I also had the chance to learn about the development of the human heart, how it functions, how CHDs can develop, and the future of heart research from Dr. John Klingensmith from Duke University:

Klingensmith

I found it absolutely fascinating and I’m looking forward to seeing what strides we can make towards heart repair!  Kudos also go out to Dr. Klingensmith for staying and sitting through my wacky, meme-filled presentation!

This year’s conference also featured a trio of teens on the Heart Kid Panel who talked about their experiences and live with their respective CHDs.  This was really inspiring and I applaud these heroes for stepping up to share their stories…for a father of a very young heart kid, it’s REALLY encouraging to see teens who have made it through their surgeries and are doing SO well.  Trust me, it’s such a good feeling to know success for our kids is out there, it’s attainable!

Finally I got to give my presentation (sorry I don’t have a photo) to a group of victims captive audience and I have to say, it was actually a lot of fun.  Or, at least, I had a good time!  I’m not going to spoil my presentation in this post, as I’m trying to think through how to best present it on this blog.  But if you missed it, hopefully there might be a chance for you to catch it again another time.  Just sayin 🙂

Anyhow, it’s really awesome that such a conference exists in Charlotte.  I remember attending my first one last year (which was interrupted by Nolan’s admission to the hospital for low o2 sats…because that’s Nolan!) and this year’s group was WAY bigger, so kudos to everyone from Camp Luck who played a part in putting this together.  I hope this Conference continues on for 50 years and beyond, because it’s a great way for heart families in the area to learn and support one another.  I’m already looking forward to next year’s conference!

Levine Children’s Hospital

If you read this blog for, like, more than 5 minutes you know this is where Nolan’s had his surgeries and you know how I feel about this hospital.  The.  BEST.  An amazing group of surgeons, nurses, physicians, etc., working together to get CHD kids to survive AND thrive.

LCH Awards

I can’t say enough how fortunate I am to live here and have access to such a great facility.  And to think, this hospital hasn’t been around all that long…so the way I see it, they’re just gettin’ started!  I can imagine (and hope for) a future where CHDs don’t exist or total heart repairs are an easy reality, and these things will be lead by the wonderful people at Levine Children’s Hospital!

The Cookie Cult

Guys….seriously.  Who doesn’t like cookies?  Amirite?  If you want the BEST cookies, they’re right here in Charlotte, courtesy of The Cookie Cult (http://www.thecookiecult.com/).

CookieCult

This is a wonderful business started by a local heart mom and the product is beyond addicting.  If you eat one, you’ll want to eat 41, I’m not lying.  Do yourself, and your taste buds a favor: put down those dusty Chips Ahoy, tell the Saulsalitos “see ya later”…this is the cookie you want.

Wells Fargo’s Duke Energy Center

This is one of our newer skyscrapers in Uptown Charlotte, sometimes nicknamed “Voltron”.  It’s actually a cool building and lights up in different colors at night, adding a really cool visual to the city skyline.  From what I understand it uses a lot of new technology to be energy efficient and I hear a lot of people love working there.  Last year I found out you can reach out to them regarding lighting the building for a cause.  I thought, “Oh snap, how awesome would a red and blue building be for CHD Awareness Week?”  So in November I emailed them with some facts about CHDs and giving my ask.  After review, they agreed to light up to represent the Heart Warriors on Sunday, February 8th!  Just…look…at…this:

WellsFargoAwareness

I big shout out to Wells Fargo’s Duke Energy Center for doing this…I can’t look at this picture and not feel proud that I live here.  The city looks gorgeous!

 

Charlotte, NC, I love that you love our heart warriors!