Expedient Response: Three Business Days

 I'll start off with the fact that I had no idea how many new friends and acquaintances our family has made since our move to Vernonia. When I posted the link to Tuesday's post I was mildly shocked at how many comments were from people who hadn't heard about any of Brandt's medical history. He was defined by his experiences as a baby and well into toddlerhood because he made such a dramatic entrance and had quite a following for his first two years. So for those of you who are jumping into the deep end, I believe that my very first post is posted at the top of the blog if you need some background info. And if you're truly dedicated to the cause, feel free to read them all if you have a couple hours to kill. If you haven't figured it out by now, I'm a wordy writer. Why use two words when I could use ten??

Today was a perfect example of why I started this blog in the first place. Information changes SO quickly that it's impossible to keep everyone updated on a one-at-a-time basis. So we left off with me calling down thunder and lightning on the most ridiculous cardiology center that was ever founded, two unreturned urgent voicemails, and a hairbrained idea to get in touch with our old cardiologist from Montana. 

That was Tuesday. It's now 7:47pm on Thursday and I'm. wiped. out. Not so much because I ran twelve miles (because I definitely didn't) -- jumping back into the medical world has just done me in. 

By the end of the day on Wednesday the referral I had requested from our pediatrician had been accepted by Ruggerie's office and I'd had a number of phone calls with them. The joint decision was that it made more sense to have a doctor closer to home but that that doctor shouldn't be either of the ones we are working with right now. His office passed along the referral to their counterparts with Seattle Children's at the satellite clinics in south Washington (Tacoma is our most likely destination). It will probably take a week or so to hear anything definite, so I settled in for the wait. Having decided to pursue this change, I gave up the idea of pestering Dr B any further. No need to raise my blood pressure any further. If he got worse in the meantime I'd haul him into the ER. It was reassuring to know that the people I'd chosen to work with were so responsive -- they proved on multiple occasions to be proactive in reaching out to me rather than making me do all of the leg work. 

But wouldn't you know it...today around 11:00am I got a phone call from the office of good ol' Dr. B. They had gotten my urgent voicemails and decided (three business days later) that I should probably take him into the ER to be checked out. And not just any ER, the one connected to their hospital in the depths of the Portland hellscape. 

I was faced with two choices: jump on the fact that someone was finally offering a chance to take action even though we're getting close to being established with Seattle, or flip them the metaphorical bird and wait until we could get an appointment with SCH, which would likely be a couple of weeks after our request was approved. 

Sigh.

So I packed a bag as insurance against an overnight admission (not out of the question), pulled Brandt out of school and grudgingly trekked off down Highway 26. 

The cool thing about heart conditions is that you get to skip the line in the ER waiting room. Just mention the word "arrhythmia". It's neat. Anyway, we got a room pretty easily, and true to form, his monitor showed his heart rate around 90bpm the whole time we were there. Overall, though, it was a very uneventful trip. They wanted to run labs on him to check his BNP levels among other things -- if this is elevated, it would indicate emerging heart failure. Another was to check for heart damage or excessive stress (can't remember the name of it). There was the possibility that they would need to administer meds as well, so they wanted to place an IV. 

The last time someone suggested poking Brandt in the arm with a needle I had to literally pin him down with my full body weight to make it happen. I was so proud of him today. The worst part for him was the quick Novacane prick that they gave in advance, and he handled it all like an absolute pro even though they had to make two tries at it. Thankfully they did the blood draw through the IV so that was the end of the pokes and he was left alone to work through their library of movies. 

They also did an EKG. As often happens, I forgot to tell the nurse that Brandt has dextrocardia -- that is, his heart is on the "wrong" side. It isn't an issue until it is, and that point usually arrives when someone is putting leads on him. I had remembered to tell the admitting nurse as she put his monitor leads on him so that she could arrange them backwards, but I completely forgot until the EKG nurse had finished applying all twelve of the new leads. Whoops! But she was intrigued by it and ran the EKG first with the leads as they were to see what the screen would show. I've found over the years that Brandt's heart is a bit of a side-show in the ER world. The murmur caused by his Glenn and then the Fontan were always a big hit, and the dextrocardia as well, for a number of reasons.

Anyway. The EKG showed what we already knew: he's presenting largely with a junctional rhythm paired with an ectopic atrial beat that jumps in to throw things off a little more. Nothing they can fix via ablation. The labs showed that his BNP levels weren't elevated and that his heart wasn't too stressed. So we were sent home with orders to get another set of labs done. We couldn't do them there because they needed "trough" digoxin levels...that is, the lowest that the digoxin gets in his bloodstream before he doses again, ideally between 6:00 and 7:00am or pm. We still had too long before his next dose and couldn't justify hogging the ER space just to wait it out. They wanted us to come back tomorrow morning at 7:00am to have it done. 

Ha. Um, no thanks. I made them send the order to our clinic in Vernonia instead, and an extra copy to my email for good measure. You can make me claw my way through traffic once, but you've got another thing coming if you think I'll do it twice in one day when there's an easier option available.

We also scheduled his cardiac catheter for May 6th. With the referral to Seattle in progress, who knows if we'll end up keeping this date, but at the moment I'm playing both sides. If Seattle can squeeze him in in a similar time frame, I'll probably cancel this one, but I'm going to squeeze every last drop of usefulness out of them before we hop the fence for greener pastures.

With Portland in the rearview mirror, Brandt and I stopped for Cold Stone on the way home. I have a standing agreement with the kids: if they have an appointment in which needles are involved, there's ice cream at the end, and boy howdy did this kid earn it. We got back into Vernonia fifteen minutes before the clinic closed at 6:00pm, at which point the cardiology team proved itself to be the gift that keeps on giving. They hadn't sent the lab order. Good thing I'd have them send it to me, too! I'd checked for it before leaving the ER. But wait. The plane had left the runway without its passenger and there was no attachment on the email I had received. 

UGH.

I ended up calling the ER who scrambled and faxed it over at 6:01pm and those lovely people at the clinic stayed open after closing time to make sure we had his blood draw accomplished in time to send it off to the lab tonight. We were walking out the door at 6:06pm, having finished his blood draw in the exact window of time we needed, and just in time to catch the last half of Molly's T-ball practice. 

Guys, I'm exhausted. And while we made a little progress tonight, there's still so far to go.