It's a long one...sorry!

It's been nearly a year since I've had to post a new blog update...how cool is that?!

So, to recap, Brandt had his Glenn (surgery #2 of 3) in May of 2016. He's done really well since then, with some periodic blue spells. We checked those out with a catheter in December, found some arteriovenous malformations (AVM's...learn more about them in the previous post), and decided there was nothing to be done about them for the moment, since they were so small. Ignoring those, it's been smooth sailing since then! Aside from the brief checkup when we got home from Seattle after that, we had an appointment in April, and scheduled another for November.

But then Mr. Keeps Us On Our Toes had to play his hand. We bumped up that appointment in September when I called in to report extra lethargy and cyanosis (cyan meaning blue and -osis meaning condition...the fact that medical terms are based on Greek and Latin roots is super helpful sometimes). Brandt had been continually falling asleep on the floor, and his hands and feet seemed to be blue or purple more often than they weren't. So we did a full workup; checked his sats, quick EKG, echo, etc (the latter was a wrestling match until I stuffed a few fruit snacks into his mouth...go figure). The final conclusion was "That's the best looking single ventricle I've ever seen!"

So home we went...for a couple weeks, anyway. I ended up calling back in about the same thing, this time with corresponding low saturations. His resting sats were running about 73 instead of their usual 80+, and activity, as well as some random spells, had him down in the low 60's. We didn't do an echo or EKG at the next appointment...Ruggerie saw the blue, heard his normal heart sounds, and deduced that those AVM's we noticed in December are probably worth dealing with now. Next step was to plan another catheter with Seattle, the date of which would probably be scheduled a couple months out.

We stayed out of their office for maybe a week, but Brandt seemed to be on a downward slide, at that point. He was getting more and more uncomfortable, crankier, and he was still falling asleep on the floor, to boot. Finally, I called in again this past Monday morning, asking if we could get Brandt on oxygen, since it was looking like we had a while before any fix could happen, and I hated to see him so miserable. By the time I got a call back that evening, he had just developed a nice case of diarrhea as well, picked up from Wade, who had had it the previous week. Glorious.

When the nurse called me back, I let her in on the latest development. He hadn't had much in the way of wet diapers, so now the worry was dehydration on top of everything else. That is what ultimately landed us in the hospital that night. The goal was IV fluids for the night, monitoring, and then to send us home on the requested oxygen. All the higher-ups had agreed that the latter sounded like a good idea.

One major flaw in that plan was the fact that on a good day, Brandt is nearly impossible to get an IV into without sedation. It isn't that he's the type to fight back (he is, actually, but they have ways around it), but his veins are tiny. It has something to do with his CHD, and is a very common thing amongst heart kids. But on top of that, dehydration makes it worse! The nurse took one look at his arms when we were admitted and called for the IV team; apparently it was beyond her ability. Turns out, though, that the IV team doubles as the life flight team at Benefis, so when they walked in and introduced themselves as "the helicopter guys", I...let's just say I wasn't pleased. My eyes might have bugged out a little bit. (We are NOT being life-flighted again, thankyouverymuch.)

Anyway, we pinned down the poor kid for ten minutes, trying to place the dratted thing, and three tries later, conceded defeat. They threw around the idea of going at the hydration thing via NG tube...the kind that runs up your nose, down your throat and into your stomach. That idea didn't really go anywhere though. Eventually, they just settled for general observation and, after he threw up once (yep, it was definitely the bug Wade had had), we called it quits for the night. I'll note here that I will never again gripe about the hospital couches in Seattle. The ones here are roughly 13x worse.

So we're home again. On oxygen, which is a whole different kind of challenge than anything else we've done before. At home, we have an oxygen concentrator that runs constantly in the corner, and whenever we go out, I have a cute little backpack to hold a mini tank in. Now that Brandt actually has the accessories to go with his diagnosis, I've been noticing a lot more stares and those casual "I'm not looking at you, I'm just repeatedly glancing around the general area you're inhabiting" looks. Unimportant, but kind of interesting to observe.

We're planning a cath in the next few weeks, and crossing our fingers and toes that we can keep everyone healthy until then. I bought out the Clorox aisle today at Walmart, and have wiped down every potentially germ-harboring surface I can get my hands on. We probably won't be very social for the next little while, either, to cut down on potential exposure. Brandt has to be disease free for at least six weeks before any procedure like this, which is nigh unto impossible during cold/flu season, as we all know. Wish us luck.