Post-Glenn

It seems like life has been more hectic than ever in the past couple of weeks, what with being back at work and having out of town visitors and taxes coming up and our car conking out and requiring expensive repairs. But I am having a momentary lull at work and so wanted to post an update!

Magnus had his follow-up cardiology appointment last Monday. They did an echocardiogram (not so fun, he was very wiggly, but it went pretty fast) and everything looked good. His cardiologist told us that her goal is to transition him completely off diuretics, which means that eventually, his only medications will be aspirin and maybe zantac if he still needs it! This was surprising to me and very exciting! And she went ahead and told us to reduce his diuretic dosage from 3 times a day to 2 times a day. It's not a huge change, and yet this makes things tremendously easier for us. For one thing, I don't have to remember to pack his medication for him when he goes to the nanny's. For another, twice daily medication means that we can give his meds at the civilized hours of 7 a.m. and 7 p.m. when he's usually awake anyway, as opposed to before when we had to give him medication at 11 p.m., which was not terribly conducive to getting him to sleep soundly at night.

In addition to the meds being easier, Magnus's weight gain has really taken off since the Glenn, and especially in the last week or so. His post-Glenn physiology gives him a slower metabolic rate, making it easier to gain weight, and his cardiologist also mentioned to us that his diuretic, Lasix, tends to dull the appetite, and we did notice that his eating really improved after we switched to twice-daily meds. The last time we weighed him, we found that he had gained 200g in a 3 day period...that's almost half a pound! He's still tiny for his age, but if he can keep this up, he'll actually be on the growth curve for weight in a couple of months, for pretty much the first time since he was born. He's a bit closer to the curve in his length and head circumference, so maybe he'll catch up on those even sooner.

Magnus's next scheduled cardiology appointment is not until the end of next month. We may end up having to come in sooner if there are any problems, but if not, that will be the longest he's ever gone without seeing a cardiologist in his entire life!

Life at home

This week has really flown by since we got out of the hospital. We went home early on Saturday, and Magnus continued to be pretty fussy for his first few days at home, which made life kind of difficult because we had to go back to our regular work routines. We had a few really bad nights where he would wake up every hour or so. But I would say that as of around Thursday, Magnus was pretty much back to his old self. We posted a couple new videos showing that our happy guy is back.

On Monday, Magnus had his 4-month pediatrician's appointment. We see two pediatricians: a pediatrics resident and the doctor who supervises her. I like this arrangement because it's kind of nice to have two different perspectives on what's going on, and I like both of our doctors individually. Anyway, I think their expectations for Magnus were fairly low given what he's gone through, but we spent much of the appointment assessing his achievement of various developmental milestones, and impressively, he's more or less on track when it comes to most things. The one thing he's definitely lagging on is doing a push-up (but we're not even letting him try to do one right now because he's not supposed to strain his chest muscles until his incision is fully healed). Unsurprisingly, he also hasn't rolled over yet, but again, we don't want him to right now anyway.

So, things are pretty much back to normal around here. In a way, it's hard to believe that Magnus had open heart surgery less than 3 weeks ago.

And then tomorrow, it's our good friend Julianne's turn. Julianne has a different heart defect from Magnus, Ebstein's Anomaly, but her doctors are treating it with the same 3-stage surgical sequence. Julianne's a tough girl, and I feel confident that she'll do great tomorrow, but I'm sure her mom Clare and the rest of her family would appreciate if you stopped by her blog to offer your support, as well as sending your prayers, positive thoughts, good vibrations or whatever ethereal support you have to offer their way!

Going home!

We got the all-clear a little after 8! He's had his dressing changed and an EKG done, and now we're just waiting for cardiology to "come take a look at him" and then we're out of here!

Bloodwork looks good!

His bloodwork looks good, so I'm pretty sure we're set to go home!

Waiting to hear

Magnus had a good day and a good night. He's been off oxygen and on all oral meds and looks good. The nurse practitioner came by yesterday to check him out and said that she thought that was the first day he looked like he had turned a corner.

They sent me over to the pharmacy last night to pick up all his discharge medications, because the special pharmacy we have to go to is closed on the weekends.

So basically, everything so far looks good, and it all comes down to his final bloodwork. They took the sample around 6:30 a.m. (this time it took FOUR sticks to get a sample) and they say it takes about an hour for the results, but there's usually a little lag, so I'm hoping to know maybe around 8?

I hope we can get out of here in a timely fashion, then. Even though the hospital operates 24-7, things happen more slowly on the weekends and at night, so I'm bracing myself for some frustration.

So far, so good

I am pleased to report that Magnus has continued to not do anything that would extend his hospital stay. They're transitioning him back to all oral medications today (and he gets to ditch that yucky scalp IV, yay!) and weaning him off oxygen at some point, and he just has to do OK with all of that, NOT spike a fever, have his cultures from yesterday continue to turn up negative, and have a normal white blood cell count tomorrow. And then we're free! I'm trying not to get my hopes up too high, though, since that's quite a few things that all have to go our way.

48 hours

So the good news is that Magnus's white blood cell count this morning was back to normal and his temperature has also been normal. But the bad news is that since he "spiked a temp" earlier, they need to let the cultures they took this morning grow for 48 hours to rule out infection.

So, the earliest we could go home is Saturday. However, there are a few things that could stymie this plan: he could get another fever, the cultures could turn up positive at some point, or the doctors could just decide that he needs a 7-day course of IV antibiotics (he is now on day 3). But we're keeping our fingers crossed that none of that happens and we get out of here Saturday.