Then we headed over to cardiology for Brianna to see Dr. Salerno. (She doesn't like having her picture taken but her brother was ready to ham it up with Dr gloves.) I called him last week because Brianna passed out in science class & we wanted to be sure this isn't related to her Wolf Parkinson White syndrome or an episode of SVT. In my gut, I didn't think it was likely to be anything life threatening, but mostly I wanted some guidelines on when or if she should be taken to Urgent Care/ER, and something fore the school to ease their fears so we don't end up with 10 ambulance bills before school is out. 😂
Dr. Salerno agreed that it was unlikely to be life threatening & thinks it is probably a combination of teenage hormones, dehydration, & needing protein (specifically) in her breakfast. Not just cereal or fruit. But he did give her another 30 day heart monitor to make sure there's nothing more to it. They have a sweet new model that just has 1 bigger electrode that the small monitor clips onto. And then it has a Samsung "phone" that monitors constantly. So even if she doesn't press the button, if it sees something fishy, it records anyway. And then the phone just transmits events as they happen to the Dr's office. It's pretty slick & makes no noise during recording or transmitting. If you've ever had an event monitor, you know how exciting that is.
So, more hurry up & wait for Bri. Wear heart monitor, drink a MINIMUM of 80 oz of fluid every day, add protein to breakfast every day. Hopefully she quits having dizzy spells & generally feels better.
Then we headed to the Craniofacial clinic where we saw Dr. Hopper, his plastic surgeon, and Dr. Wenger, his Craniofacial pediatrician. Dr. Hopper is very happy with how his skull is growing & how much more even the 2 sides are. I wish I would have snapped some pictures when they showed us his pre-surgery CT side by side with the one they did in the morning. It's quite striking. If you look at him from certain angles, you can absolutely still see the asymmetry, but it's nothing compared to what it was. There's still a small soft spot on the back of his head, but that's good for allowing his head to continue to grow appropriately. He said barring any issues with other things (jaw alignment or something) he doesn't need to see Arron for 2-3 years. Dr. Wenger is also very happy with his progression & how he's making up ground on his developmental delays. We spoke about some of the therapies he's receiving & some he may benefit from. Those discussions are ongoing & she's also putting in a referral for us to see a neurodevelopmental specialist for evaluation to make sure we're giving him the best advantages we can.
On Tuesday, our only appointment was with Dr. Johnson, our otolaryngologist (ear, nose, & throat). And probably the appointment I was most anxious about. A2 has had his finger digging in his left ear the last 2 weeks so I was hoping his tube was still in place & not blocked. Fortunately, it was fine, he just had ear wax & some crusty stuff in there. There was a glob of drainage stuck to the tube but he didn't want to risk dislodging the tube, so we are doing ear drops for a week to make sure it's not still draining & hopefully dislodge that chunk of goo. I also wanted him to look at Arron's CT and see if it explains why he has such a hard time when he gets sick & congested. It's just so hard to get things thinned & draining. Sometimes even the suction machine doesn't help as much as I feel like it should. So, he pulled up the CT, and noted several things right off the bat.
1) he's got a severely deviated septum, which can contribute to the issues with congestion. The good news is, these things seem to heal best after surgery in the teenage years. So as long as he's breathing ok, & no sleep apnea, we will just wait & watch.
2) his left sinus looks fine, but currently his right sinus is pretty much completely closed. He said it could be inflammation from him being congested, but it didn't look like it was full of snot/puss/fluid. But without getting an image when he's fully healthy, it's hard to know if the sinus is just undersized to begin with.
3) his adenoids are enlarged. Again, with him being congested, that could be why they're large, or they might just be large. Again, if no sleep apnea, and he's eating ok, they aren't causing issues, we will leave them alone. However, if his current tubes fall out & he needs a second set, they will take the adenoids. But he said they would for any kid, even without a CT showing they're enlarged.
I did talk to him briefly about the fact that Arron snores when he sleeps so he gave me some other signs to watch for that would indicate apnea. He also wants me to sit & watch Arron sleep for at least an hour a few times, both in the evening & in the morning, to make sure he's not having periods of arrest.
Thanks for following along on our journey at SCH. 😁