First of all, I have to say I am overwhelmed and humbled by the faithfulness of my praying friends. Talk smack or whatever about facebook, but when I posted this morning in need of prayers doing to some increasing anxiety, my friends came through in spades. I love each of you --- and I love how you have loved on our family and continue to do so through this journey.
And that's what this is: a journey. A marathon in some respects. Q's journey will never be complete - I'm sure I've mentioned that before. She will be monitored for the rest of her life - prayerfully these monitorings will eventually increase to every year or every other year instead of every 6 months. But since she's relatively fresh from surgery, it makes us all feel better to go every 6 months for the full monty work up.
Anyway, today was our cardio check up, complete with echo, X-ray, EKG, the works. First, I have to say I LOVE, LOVE, LOVE our new cardiologist. I think I said that the last time but she is so wonderful, compassionate, knowledgeable and she just "gets it". Plus, now that we are at the Sugar Land branch of TCH for appointments like this, it's almost like having a speed pass. Whereas in the Med Center you may spend practically a full day getting all of your "checks" done, here you barely have time to take a seat before you are being brought to the next area. So lovely. And they do non-sedation echos as much as they can for the younger ones. At the other office, no matter what, if you are under 3, you are getting sedated. They choose not to be patient and see if the child just relaxes for the 20-30 minutes and watches a movie. Instead they are given a vile sedation drug, which Q reacts horribly to, always vomits, and always wakes up irritated and drunk-like. Today instead, we popped in "Olivia" and the child could not have been more content to just lay there during the echo. What a blessing. In fact, she was such an angel the entire morning that no one believed me when I said that she was the more feisty/troublemaker versus Ryan : )
Ok, so to the update. Basically all in all, everything looked "okay". I say "okay" because it's not perfect. We didn't expect it to be but there were a couple of developments. Her last echo 6 months ago showed a narrowing of the branch pulmonary arteries (called pulmonary stenosis) but it was at a fairly mild level. This new echo showed a bit of a worsening of that from mild to moderate. In order to get a better picture, Dr. R. is recommended a diagnostic MRI to get a better picture of her heart and the arteries to ensure they are measuring the flows through those arteries correctly. The MRI isn't a huge deal except it has to be done under general anesthesia so they can get the best possible pictures without her moving an inch.
Here is a picture depicting stenosis if you want to check it out:
Depending upon the results, it could mean two things:
1. This MRI will set a baseline, if you will, of what level the stenosis is at currently. It will be something we will watch over the next couple of years and take action when necessary.
2. It could mean that the stenosis is concerning enough that it's time to go ahead and stent the branch arteries to open them up with a little balloon, much like you would do in an adult who's had a heart attack. The catheter procedure is something Q has been through before --- it's not super fun but it's a heck of a lot better than open-heart surgery. Basically a day procedure unless there's any complications and a couple of day's recovery. Not exactly thrilled that the potential for the stenting is earlier than expected but trying to not get too ahead of ourselves. Since we aren't at a critical juncture, we will schedule the MRI early this fall and go from there.
The best news of the day (besides the fact that Q is progressing normally as a toddler and experiencing no other issues related to her heart --- nothing slows this kid down!) is that they still expect the replacement of her bad pulmonary valve (requiring open-heart) to be years and years down the road. Probably well into her early to mid-teenage years. GREAT news because we don't want to start replacing things that she will continue to grow out of and need replacement every 3-4 years.
So, Team Quinn, we'll go from here. We are forever grateful for your prayers and following us on this roller coaster ride. One day at a time, one step at a time. Now this momma is going to finally try to get some sleep and let the anxiety roll of my shoulders for now. Love you all so much.
|Waiting for the doctor. All accessories present. We tried to have a little talk about how polka dots and plaids may not be the best coordinating items, but the princess insisted. The chunky yellow bracelet is a nice touch, no?|