Cardiology Update - Miss Bella

I never thought I would be using Lucianna's blog to update you on Bella who is typically the vision of health!

The update on Bella's abnormal EKG:   The very, very good news:  Bella doesn't not have either of the two life threatening conditions that were being considered in her possible diagnosis with the abnormal EKG taken at the ER last Thursday.  <big sigh of relief>.

That leaves us 3 other situations:  1. that it was just a fluke related to her being sick or 2. possibly some inflammation occurring near her heart but that's unlikely since these are caused by Rheumatic diseases that take a lot longer time to fester.  The last condition is called, Supraventricular Tachycardia .This condition occurs when there is an extra nerve in the heart that causes the electrical system to not work properly causing an irregular or fast beating heart and a fast pulse.  Because I didn't get a pulse rate (bad mommy), when the episode was happening, we can't fully be sure the problem is SVT.  SVT occurs or rears it's ugly head, at times of physical vulnerability...so when you are sick, drinking too much caffeine, too much mountain dew, or chocolate.  None of these fit Bella -except being sick.  These heart palpitations come on quickly and can resolve within a few minutes or a few hours.  They usually come back, but there is no clear answer on the timing...it could happen in a cluster or not for years - but again at a time when there is physical vulnerability.  SVT is typically not life threatening.  Treatment is a beta-blocker or surgery of the heart done with a catheter through the leg to remove the part of the heart causing the issues.

Her cardiologist has ordered an ECHO, and it is scheduled for Wednesday, 7/17.  After the ECHO, we can be assured that the only other thing to watch for is SVT.  Then we just watch and wait.  They want me to get a stethoscope and I need to practice taking heart rates and get comfortable and good at it.  If she has another episode of irregular heart palpitations,  I get the rate and if it's over 160, go directly to the ER.  At that time, we will be given a heart rate device that Bella wears all the time so that we get a good measurement with the next episode.  Then the activity is recorded and we know for sure what's going on.

So once we get an echocardiogram that looks normal, then we know the only other thing it COULD be is the SVT.  And SVT is something there is treatment for!

So we watch and wait and take it one day at time!

Much love,

Bella's Mom

"You can't stop the waves, but you can learn how to surf!"

July 4th

Abigail let me borrow this!

JUMP!

Dear friends and family,

I have gotten a few texts and emails asking about Lucianna's health and wanted to post something just to keep everyone updated.  Currently, we are in a waiting game to see if the latest increase in the Methotrexate drug has eliminated the inflammation that persists in her left eye.  We are also giving her Curcumin (Meriva brand), that we learned through a medical study has shown to assist those with Uveitis.  We don't know if it'll work, but her ophthalmologist says that it won't hurt.  I haven't heard her complain about her eyes and I haven't seen redness, (knock on wood).  The only eye issue she has is significant sensitivity to light.  When outside, she wears sunglasses everywhere she goes.  She is practically unable to open her eyes without sunglasses.  We have had a busy summer so far- lots of playdates/sleepovers, a visit to NY in May, June and July.  Swimming lessons,(the first round of two weeks worth) and our first "cousins vacation" to Sesame Place!  Lucianna's mobility is awesome.  She tires out when doing long or strenuous walks, (but so would I!) We still keep her stroller close at hand for those scenario's and so far she seems completely comfortable jumping in it when it's needed.

Do you mind sharing that?

At present, both girls are sick.  Bella has Strep Throat and Lucianna has a stomach virus.  It has been a very exciting couple of days for us!  I don't know a mom out there who handles projectile vomiting with ease.  Now about Bella: without going into a long story that could be a mute point, we are also taking some steps to double check a heart issue that Bella had this week.  Basically she had a rapid heartbeat that caused me enough concern that I took her to the ER.  Once there, she was much better but we chose to have an EKG anyway at the recommendation of the ER doctor (who was awesome).  The EKG came back abnormal and the ER doctor wants us to follow up with a pediatric cardiologist on Monday - our appt is 1:40pm.  At this point, I am not allowing myself to panic - there's just no time in the schedule to panic.  My gut tells me it's nothing and right now, that's going to have to suffice.  She is playing and acting like her usual self.  Lucianna however is green - lol...but tomorrow is another day and hopefully she'll be feeling back to her old self tomorrow!

Riding the swings with Mommy!

If I don't post anything next week or you don't get an email/text, consider Bella A-OK.  :)  As for Miss L, we will know August 21st if there has been an improvement in her eyes.

We hope all of you are enjoying your summer and staying cool!

Love,
Lucianna's Mom

"Daughters are like flowers, they fill the world with beauty,

and sometimes attract pests."  - author unknown

Nonna's flowers