...Another thing that has been on my mind almost all the time.. These appointments that we've been waiting for, for Antonio.. 3 appts at the UVA Children's Hospital that his cardiologist referred him to.. Specialists that are among the best in the country for heart rhythm issues & connective tissue disorders affecting the heart.. All I wanted was to hear good news.. We could use some good news right about now.. I would rather be the only one sick right now than my sweet darling Antonio too..
...It's been 3 months since he was sent from Urgent Care to the Emergency Room,.. 3 months since they told us to bypass the closest 2 hospitals & go to the next state to one with more state of the art equipment & pediatric specialists,.. since each EKG he received had questionable things on it,.. since the consulted cardiologist wanted to see him in his office,.. since the additional cardiological tests also showed questionable things,.. since the question arose of possible QT syndrome and/or Marfan's syndrome.. It's been 2 months & 2 weeks since the cardiologist called personally with his recommendation to refer Antonio to 2 specialists at the UVA Children's Hospital.. The specialists were kind enough to coordinate to arrange to see Antonio the same day, since we were coming from so far.. Because of that, the appointment took over 2 months to come.. And here it was..
...Similar to my thoughts & prayers in going to my own appointment just 1 week ago (has it really been that short amount of time?), I kept thinking & praying about all of the 'what ifs?'... of course the big ones,.. but also the small ones that were more about helping my sanity today than anything really important... We've felt optimistic about it, these appointments were precautionary, there was no definite diagnosis, & everything was just on even the border of a gray area, it may be nothing.. But still there was that chance.. And lately every time I'm optimistic about something, some sort of 'uncommon occurrence' slaps me in the face..
..Antonio had been saying he wasn't really nervous about it.. He kind of looked forward to the scientific & physical aspects of the tests.. So sweet & strong, my darling boy.. I pray he wasn't holding anything back with his feelings from me.. But as a teenager, I'm sure it's inevitable that he does...
...I was overwhelmed,.. & impressed.. The medical facilities around the UVA campus are extensive, with young medical students & doctors dressed in their scrubs walking around everywhere.. I don't know how we would've ever found the building, much less the office inside that building, or even parking, without the detailed instructions they'd sent to us.. GPS was moot once inside the area..
...The 6th floor office had a wall of windows overlooking the mountains.. I thought, 'if you have to be in or work in a hospital, what a beautiful peaceful view to look at'.. I've often felt the size of my anxieties or problems seem to be brought into a smaller perspective by throwing myself into & being absorbed by nature.. And looking at these mountains did the same.. We are all tiny, in amongst a much bigger picture, one where everything in the end is promised by Jehovah, 'who cannot lie', to be ok,.. to be better than ok,.. to be perfect.. And I'm reminded that everything truly will be fine..
...I was impressed by the timeliness of the office.. 1:00 appt, 2:00 appt, 2:30 appt.. All of our Antonio's appointments were handled right on time, almost to the very minute.. He handled the 1:00 tests like a pro (where did this phenomenally strong young man come from?).. The 2:30 specialist even swapped & came in at 2:00 when the 2:00 specialist was running late w/ another patient.. He was young, cool & personable.. He sat on the patient table with Antonio & swung his legs a little.. He wore black & white polka dot socks.. He explained impossibly scientific things to us in ways that we actually understood.. And when he asked genetics questions, he had a tablet that he quickly made swipes on while barely even looking at it as if his hand was moving on its own accord without him even having to think about it,.. all in order to create a family tree, even as complicated as the one I was trying to explain (why do we have to have such an odd family tree situation..).. He had 2 interns with him.. I kept forgetting they were there.. They observed so quietly, & every now & then nodded.. They left with him as quietly & shyly as they came in.. While we waited on the other specialist, the cool polka-dotted-socks one kept checking on us & asking if we were thirsty.. How nice is that..
...The second specialist was.. different.. He strolled in with his short & plump body, a little cocky, pulled up a chair, leaned back in it, & stuck his feet straight out in front of him, with his hands folded on his very swollen belly, like he was in an easy chair at home.. (Matt later said- 'how can a doctor who works with heart health be so out of shape..')(Antonio liked him a lot- he thought he was amusing..) The cool polka-dotted-socks doctor sat on the sink counter.. The 2 interns were back too.. 4 people in there all for Antonio.. Again, a little overwhelmed,.. & impressed.. Despite his demeanor, short-&-plump doctor explained things in terms easily understood too.. And both doctors seemed to respect each other.. We were impressed with how much they had educated themselves on Antonio's file.. So had the nurse who had administered Antonio's previous test.. We definitely felt comfortable we were in the right place..
...The good news is that they are pretty certain that QT syndrome can be ruled out.. at least for the time being.. It's a little tough with a tad of an incomplete family history on one side.. Marfan's syndrome cannot be completely diagnosed or ruled out at this point.. Genetic testing is an option.. But sometimes that raises more questions than provides answers.. They do recommend seeing an ophthalmologist (not an optometrist) to check his retinas for some of the other signs of Marfan's syndrome.. And Antonio will need to continue to see his cardiologist annually for heart ultrasounds to monitor & check for changes in his heart as he grows.. But at this point his heart is looking good.. And that is unlikely to change within just the next year before his next appointment with the cardiologist....
...Relief!.. Yet it still seems that complete relief likes to remain elusive.. Because there are always possibilities still hanging.. My mind exhausts me.. Still the 2 1/2 hr ride home felt lighter.. And I couldn't help but think that many of the parents there today likely have much less positive news.. I dozed off & on, on the way home.. I feel so overwhelmingly exhausted..
...Thankful to Jehovah.. Grateful for my reasonably healthy darling son.. Grateful for my husband reaching over to hold my hand while he drives.. One day at a time.. One moment at a time..
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