We've been inpatient since Friday afternoon. We planned this visit at our first ER visit a couple weeks back, with the intent to change his meds and do a catheter. I think I forgot to mention that we went back the next day due to continuing nausea and were sent home with "well, his digoxin levels are fine, so tough cookies!" Ugh. So that meant that we weren't looking at digoxin toxicity (overdose) but didn't help the immediate issue at all.
My mom-in-law suggested putting his pill into a capsule to delay the digestion a bit and give his stomach a break. It worked! So the days between that ER visit and our current hospital habitation haven't been miserable, at least. His heart rate still stayed high, and resorted to crazy rhythms now and then, but he felt good. That was good enough for me, for the time being.
6-7pm so that Brandt wouldn't have to miss more school than necessary. Got a call from Cardio on Monday requesting we move it up to late morning, because Dr B wanted us there early enough to get in an extra dose of meds. Dutifully showing up at 11:30, we were then told by the front desk that they were expecting us between 6 and 7 and didn't have a room ready. Guess who dropped the communication ball again? (Eye roll.)
We knew it was going to be the boringest of boring stays. No one really wants to have a super sick kid in the hospital, but having been on both sides of the situation, if I had to accompany a kid to the hospital, I'd still much rather do it while he's a little bit less energetic. The first afternoon was fine. By the end of the first 24 hours, we had watched four movies, played every game we brought with us, built one Lego set and I was grabbing my purse to run to Target for more because the frustrated tears had begun to kick in. Newness wears off faster than it can be supplied, and when cabin fever kicks in full force, even screens don't cut it.
Sunday, Tanner brought the kids up to visit, which was exactly what was needed. They were all so excited to see each other! And as it's always been during hospital stays, having Tanner around helped me get my head on straight again.
He also informed me that he was going to take on the mental load of dealing with insurance through this whole thing, which was like a physical weight gone. The backstory there is that due to a job change, we're dealing with COBRA for a couple months but our insurance information won't validate in the hospital's system until everything is processed. COBRA will cover everything retroactively, so we're not concerned, but the hospital billing department flagged us as an uninsured six-figure case before we even walked in the front door and has been mildly aggressive with their concerned phone calls -- the concern here being that they might not get paid, not that there might be hardship on the family of a patient. Healthcare is overpriced? What?!
That all brings us to today. It's currently 11:11pm and the events of the day have finally wrapped up.
Brandt's catheter is finished. It's been something like seven years since his last one -- he was 18 months old or so -- and while much of it is the same as ever, much was different too. Toddler Brandt had no idea what was going on, before, during or after the procedure. Big Brandt had plenty of time to get nervous about it and still pushed through like an utter champ.
We had orders not to give food after midnight, so by 12:00pm when the surgeon and anesthesiologist came by with consent forms and plans for the procedure, he was already getting restless and cranky. When they told us it would be another couple hours due to an emergent case (original start time was supposed to be 12:45), we decided that more Legos were in order. I've bought just about every $10 set you can find at Target this weekend!
The cath itself didn't show us anything surprising. They checked out his Fontan stent, which is apparently nice and large -- 20mm vs the 12mm that they usually see -- and the size lends itself to not restricting blood flow or raising pressures too high. His left pulmonary artery (LPA) had been stented as a newborn and was now causing some narrowing, so they ballooned that open. Otherwise, his pressures looked good and there wasn't much else to comment on.
They also performed a liver biopsy while they were there, and we'll get results back from that in the next couple weeks. This was to establish a baseline, so they don't expect to find anything shocking. Fontan kids often have liver trouble later in life, and the jury is still out as to why that is. Pressures too high? Pressures too low? Too many medications? Who knows. But they do start to keep an eye on it around Brandt's age.
When we leave tomorrow, Brandt gets yet another Holter monitor, this time for 2-4 weeks. They'll decide at our follow-up in two weeks whether or not he needs to wear it for another fortnight. The sotalol that he has been on for the past week has been working fairly well, but his sinus and ventricular rhythms are all out of whack. The consensus for now is that we can't let perfection be the enemy of good enough, but if it gets worse or his heart starts showing signs of fatigue / failure in the future, we'll need to look into a pacemaker. Hopefully that won't be for a long while.
So now you're all caught up, and I'm going to bed! Tomorrow night, I get to sleep in my bed, which sounds utterly blissful.
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