Better late than never!

We spent most of Monday at Seattle Children's and were back Tuesday morning for one more appointment. Monday we started with another kidney ultrasound for Arron, followed by a head CT. Arron was a champ & sat still for both exams. He seemed kinda nervous about the CT, but it meant he sat really still, so that was great. 

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. 😁

Up next, ear tubes!

I took Arron to see a new specialist today at Seattle Children's, an otolaryngologist. (Commonly known as an Ear, Nose, and Throat doctor.) Our eye Dr had mentioned a possible diagnosis that could explain some of Arron's various symptoms and that at some point we should have him evaluated for it. Of course the name of it escapes me now, 3 months later & somehow I didn't write it down anywhere. At any rate, we thought he was going to start walking any day, but as that didn't materialize, I decided to call & get an appointment & I'm glad I called when I did. There are only 2 or 3 OTOs that work with the craniofacial team and their schedules are BUSY! 

So anyway, he said the number of ear infections Arron had last winter would qualify him as a candidate for tubes. And, on inspection, he still has a lot of fluid behind the right eardrum and almost done behind the left. He said it's absolutely possible that it is impacting his balance. His torticollis also has him tilting right, which only further stacks the deck against him. So while he can't say for certain that it will help, he wouldn't be surprised if he started walking shortly after the tubes go in. I am anxiously awaiting the call from his scheduler. 

He also mentioned that he is 1 of 2 providers at Children's that can perform a procedure through the nose to fix Arron's tear ducts if they become an issue again. It's about a 2.5 hour surgery, completed by him and our opthalmologist as a team. He doesn't think it is necessary at this point, but wanted to put it on my radar as an option in the future, if needed. I believe it's called an endoscopic dacryocystorhinostomy. 

She's all done

Her Dr came out to talk to us and once again, she's the weird kid. The good news is, her pathway is low risk. So we don't have to worry about sudden cardiac death! The less awesome news is, while testing the pathway she went into true SVT, which is what he was looking for on her heart monitor she's had for the last month. So, since she went into SVT, he decided it made sense to find the pathway & try to destroy it. So the leg caths went in, meaning 4+ hours of recovery. But once he found it, it's right next to her AV node. Which means destroying the accessory pathway has a risk of destroying the AV node, and then she would need an immediate, emergency pacemaker placement. He decided that the risk of destroying the path outweighed the benefit since we know it's a low-risk path & she's never had SVT documented before. 

So we're just kicking it in recovery, watching Netflix with dad, waiting for 4 pm, when they'll get her up & make sure she's clotted correctly & then send us home. 

1st Update

They book Bri to the OR about 8:45, and we just got our first update. Dr. Salerno was planning to start with just testing the pathway & determining if she had a high or low risk pathway. If it was low, the procedure would be over with just one catheter in through her neck. 

Unfortunately she had sustained episodes of SVT during the first part of the procedure, so they are going to locate & destroy her accessory pathway. That means she needs the catheters in her groin on both sides, and a minimum 4 hours of recovery to allow for clotting. This next part of the procedure can be 3-6 hours. 

Seattle Children's Part II (a bit belated)

So we took Bri up to meet Dr. Salerno. The cardiologist & electrophysicist who will be doing her heart procedure. He is the head of electrophysiology at Children's, has done more than 500 procedures in his own and has done another 1,000+ as part of a team. He's very knowledgeable and has a 12-year old daughter too. 

I realize that I haven't really explained what WPW is, so this post will be a bit longer to fill in some background. WOW is an arrhythmia that occurs when you have an extra bundle of conductive tissue in your heart. The electrical signals that cause your heart to beat SHOULD go from the sinus node, to the AV node which causes the bottom of the heart to pump, and then dissipate to start again. In WPW, the extra conductive pathway is called an accessory pathway, and where it is & how strong it is, determine if it is low risk or high risk. A high risk pathway can lead to sudden cardiac death if she has a tachycardic episode that travels down the accessory pathway and puts her into a rhythm called v-fib. So nothing to take lightly. 

The first step was to meet with a cardiologist (Dr Trippel) & do another EKG. She was still in WPW, so the next step was a 24-hour Holter monitor. So it recorded 24-hours of heart activity & when Dr Trippel reviewed it, she never converted back to a normal rhythm. So the next step was a cardiac stress test. They hook you up to an EKG machine, put you on a treadmill, and every 3 minutes it gets faster at a higher incline until they max out your heart rate or you have to stop for some other reason. Bri called it quits at 5 mph & 18% incline because of knee pain. She really hasn't done much running or rehab since her surgeries. Her heart rate was just over 200. The good news was her heart responded appropriately to the exercise & recovered appropriately after. The bad news was, she never converted out of WPW. So we know her pathway can conduct up to 200 beats per minute. It's only considered high risk if it conducts at least 250 bpm but we don't know if hers will since we couldn't get her heart rate that high. 

So, they sent us to meet Dr. Salerno because they aren't able to prove that her pathway is low risk. Since her last knee surgery, she has also started reporting bouts of tachycardia. So, Dr Salerno said it would be helpful to catch some of these episodes on a heart monitor. They may give him a clue as to whether or not her episodes are dangerous. For the actual procedure, Dr Salerno doesn't usually recommend destroying the pathway if he can prove it is low risk. The risks of other heart damage during that process often outweigh the benefits. If it is a high risk pathway, it definitely needs to be destroyed. 

So, the initial plan, is 1 catheter into the neck to map her heart, find the pathway, & test it. If it's high risk, 3 more catheters will be inserted through the groin, 2 in one leg, 1 in the other, and they will destroy the accessory pathway. Unless the heart monitor she's sporting right now shows Dr S what he's looking for & knows up front that it's dangerous & needs to go. They'll still have to map it & find it, but there may be less testing. 

Depending on where it is determines if they burn it or freeze it & also dictates the various potential complications. Those range from bruising to stroke, pulmonary embolism to destroying her AV node requiring immediate placement of a pacemaker, and death. But, if it all goes off without a hitch, we go home same day. It's scheduled for March 14th. 

Seattle Children's Part I (for the week)

Today we are at Children's with Arron having his eyes rechecked to see if his tear ducts are blocked again. He's got the dye in his eyes now & the Dr should be back soon to check him. 

Dr came back & all looked good! Just needs to be seen around his second birthday to have his eyes dialated & the whole shebang. 

We will be back on Thursday with Bri to meet the cardiologist who will do her ablation.