The Heart of My Child...

I've put off writing about this because I was waiting for more information... and I didn't know how much of it to put out there, but we're kind of at a standstill (and I have an adorable video to post) so I thought I'd just dive right in. (Some of you already know this background, but for those of you that don't, I'll start with a quick summary... or at least as quick as I can be).

Wednesday - October 10, 2007 - (Braden is 10 months old). After two days of a high fever I had an appointment to bring Braden into the pediatrician. In the meantime we were told to give him Infant Motrin to control the fever. For good measure and to give the doctor the next day the most info possible I decided to wake Braden up about 10pm to check his temp again and see if he needed more Motrin. Well... not only was his fever completely gone... it dropped in the other direction to 94.5. Braden was in good spirits, his hands, feet and lips weren't cool so I put him back to bed. But it just wasn't sitting well with me. So I hopped onto WebMd... and Google... anything to see what a low temp like that meant, particularly in young children. Guess what, there isn't a lot of information out there for low fevers so I called Northwestern Hospital ER and asked them what they thought... they told me to bring him in immediately and that his temp was indicating borderline hypothermia.... say what?!? We got there, they hooked him up to things and found that his heart rate was in the 50s. Doctors and nurses are stunned by this. What does that mean? We didn't know, what's average for a kid his age? Say that again... 100-120??? So again... what does this mean?
We were referred to Children's Hospital in Chicago and went directly there. Braden was given a few EKGs, an IV, and an Echo cardiogram. (His low fever was gone now... and hasn't ever returned, there has never been an explanation for this, only that is was the warning sign that kicked everything else into motion). Indeed this heart rate was generally staying in the 50s/60s (and into the 40s when he slept). We were moved to the PICU and stayed there for several days. They ran ALL kinds of tests on him and he remained in good spirits the entire time. Nothing about him seemed "sick". His Echo showed that his heart was functioning at 100%. All the tests came back with no information (except that he was showing slight signs of hypothyroidism). He wasn't born with a low heart rate like this...
I could share many more details of the hospital stay (which Chad had to leave, two of his very best friends were getting married that Friday and he was in the wedding). Braden wasn't in any "danger", they had gotten the information they could for the time and sent us home that Saturday afternoon.
The diagnosis: Bradycardia with a Type One Second Degree Heart Block (Wenckeback AV Block) In case you want to know what that is, click the link.
Hmm... so now what? He was put on a low dosage of Thyroid medication (which he has been off of about 6/7 months now and has tested twice since then with a normal thyroid). But that was it... since the Bradycardia showed no symptoms and a follow up 3 months later showed no change it just "is what it is", no medications, no limitations. But something for us to keep tabs on, which finally brings me to the point of this post.
It was about the time we needed to get things checked out and we were also leaving Canada. We wanted to take advantage of getting testing done before we left because of the "free" health care. So while Chad loaded up the moving truck, I took Braden in for some follow up testing. All the blood work came back normal (woo-hoo, always a relief). And the EKG "looked good" according to the nurse, he still had a low heart rate, but nothing "shocking" showed up from her look at things.
Well... well... well...
3 WEEKS LATER Chad gets a frantic call from someone in Canada telling us that they have looked over our son's EKG and he has a heart block (a complete heart block... what?) and he's never seen anything like it in such a young person, we need to bring him to the ER. And off we go. We're not really panicky since the child is showing NO signs of slowing down and it's been 3 weeks?!?! But I'm concerned, a bit scared and questioning myself and how I didn't call to demand the results sooner, blah, blah. We get him there... sure enough they locate a Heart Block... but it's not complete but to know if it's made any change from before we have to take him to the experts. In Seattle.
All the referral paperwork as been done and the earliest we can get in for a "non-dangerous, non-emergency" visit is Friday, May 22nd. The doctors in Bellingham told us this isn't something you see in children his age and it's best that we work with the (it's long I'm warning you) Electrophysiologist Pediatric Cardiologists to check in with and see if there is any plan of action we need to take and make several visits the next 6-12 months to get a really good look at things.
The good news... Braden is in no immediate or predictable danger! Seattle Children's Hospital is ranked #8 in the country, which is also a relief to know he'll be in good care. And quite frankly, it's very comforting just to spend time with Braden and see how strong he is and looking at him you would never, ever think his heart beats at half the "normal" rate for a kid his age. We're optimistic and just think (and hope) his heart is just that much more efficient to do the same job with half the work (future super athlete???) :)
The bad news... it's my child's heart and knowing it's not perfect is a scary thought.
Wait... I take it back. His heart may not function perfect according to the textbooks... but his little heart with all his hugs and kisses and cuddles is absolutely beautiful and perfect through his mother's eyes.
Now - if you've made it this far it's worth it to watch the very quick video of Braden in the ER last week. So it's clear - he says, "Let's get out of here, Let's get out of here - fake burp - Excuse Me!"