Thursday, February 12, 2015

Our Heartbreaker's Heart...

Yesterday was Brian's appointment with Dr. Gina Baffa, one of the top pediatric cardiologists (in the world, to us!) at Nemours A.I. duPont Hospital for Children.  Otherwise known to us as "Gavin's Hospital."  And Dr. Baffa was the cardiologist who cared for Gavin in his final days as he had multiple cardiac arrests.  When issues cropped up with Brian and we wanted him to be seen by a cardiologist - she was our only choice.  The hospital doesn't even accept our insurance anymore, but we didn't care.  It could only have been Dr. Baffa and she didn't disappoint.

The short story:  Brian's heart is in perfect working order.

The long story:  It was a long, exhausting day with the end result being a huge sigh of relief for me and for Ed.

My Mom came to the house at lunchtime to stay with Hope and Ed and I drove with Brian to the hospital.  It was our first time seeing the new renovations and it was pretty incredible!  We only saw the main lobby and the gift shop - but it was very impressive.  Brian spent some time in front of their interactive "Discovery Wall" which we all thought was very cool!

We also stopped into the gift shop, a ritual of ours, and picked out some Valentine's Day gifts for Granny and Hope!
When we got to Cardiology, the first step was to get an EKG.  After the test, we met with Dr. Baffa to go over the results.  She started with all wonderful news about how beautiful his heart was, and how this chamber and that area looked good and so on and so on.  All I could think of was, "She's preparing us for bad news by telling us all the good stuff first."  That describes just how scared I was. So when all of a sudden she said, "But... I did see something unusual..."  I suddenly felt dizzy.  I could barely concentrate on the other words - all I know is she wanted him to get an echocardiogram to make sure everything was okay.


I gave myself an internal pep talk and a "get it together" lecture and turned to Brian with a smile.  I was terrified - but he wouldn't have known.

The echocardiogram was long - about 40 minutes - and Brian was such a trooper.  He laid on this side and that side - tilted his neck back and lifted his arm up.  He was so good.

It didn't take long before Dr. Baffa was back in the room to tell us that everything was fine.  

Everything was fine.
Everything was fine, Kate.  (I still have to remind myself.)

She recommended that we follow up with a pulmonologist to get to the bottom of the shortness of breath issue - and we will.  Many people have suggested that Brian might have "Exercise Induced Asthma" and this is something she said it could be as well.  We shall see.

We left feeling extremely relieved.  It's hard for us to not go to a dark place of fear sometimes.  Gavin stunned us with his sudden, unexpected death from, basically, heart failure.  What if there was some kind of genetic issue that affected the heart of Gavin - and went undetected in Brian - my mind went all over the place with worries and fears.  As I put Brian to bed last night, I told him how happy I was that his appointment went so well.  He said, "Mommy?  Why am I different than the other kids?  Why can't I keep my breath and run like they do?"

I didn't have an answer... but I vowed to him that I would find out.  And we'd figure out how to fix it together.

I had planned to write all about the appointment last night - but I'm battling a bad cold and was just so tired.  "I'll write in the morning when Hope goes down for her nap," I thought to myself.

Well.... that didn't happen.

Just as I sat down - the phone rang.  It was the school nurse.  Brian had thrown up in the classroom. In the nurses office.  In his shoes.  Everywhere.  She put him in a borrowed sweatsuit and socks until we got there.  Ed left work and raced to the school to get him.  He's been in bed all day.  He sat up for a short time to play with his lego table - not straying too far away from his bucket...
...but he couldn't stay "upright" for long.  Poor kid.  Poor ALL of us!  I would say this is almost becoming comical - that we've had a never ending cycle of sickness this Winter - but it's not.  At least I'm not laughing.  And if I do start laughing, then you know that I have lost my mind.

If you're keeping count - this is illness #725 in our home since December.  Now we have the stomach flu in the house.  The sick Mom has to care for the sick son and keep the now healthy daughter away from the brother she is obsessed with.  Thankfully, Ed worked from home today so I didn't go totally insane.  But honestly - I really think it's time for us to leave the country to break this spell.  I am about 5 minutes away from contacting a priest to perform and exorcism in the house.  (ha!)

Oh, and if you're also keeping count of the number of the things we've had to cancel since Christmas - you can add another rescheduled trip to meet my Great Nephew, William, in New Hampshire... and our plans for Valentine's Day weekend.

The universe owes us BIG TIME.  I hope it pays in massages and pedicures and sleep.  File that under:  "A Girl Can Dream."




7 comments:

  1. Sooooo sorry.....God Bless You All!

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  2. Sooo happy to hear Brian's appointment went well!!! Soooo not happy to hear about the return of the crud!!! Hoping it's a 24 bug and is gone as quickly as it came!

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  3. My girl has (had? Not sure if it's resolved yet or not) a benign heart murmur as a young child and was then diagnosed with mild EIA when she got a little older. She eventually grew out of the EIA (something her cardiologist and GP said was likely) and the murmur has never been an issue. Praying EVERYONE is back to 100% soon!

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  4. So happy to hear that the appointment went well. Have been checking in since yesterday for an update.
    Prayers that this new big moves quickly OUT of the house & doesn't take anymore victims in its way!

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  5. Great to hear Brian's tests went so well. Sorry to hear about the stomach bug :( xx

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  6. So very happy everything is well with Brian's heart, praying it's just the weather making him breathless. All of my family have been sick too, I think it's the only time all of us have been sick at the same time, I'm also hoping it remains the only time! Hoping you all feel better soon xoxo

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  7. I still remember one winter/early spring about 8 years ago when our family was sick like this. I finally had to bleach everything in the house and keep everyone quarantined for a bit. Hang in there.

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