Some progress

Today was not a bad day, but it was very long. This morning, some of Magnus's bloodwork showed that he was anemic, which may be one of the reasons why he's been having some breathing problems. So, this afternoon, they decided to give him some blood.

However, when they started putting the blood into his IV, it started leaking everywhere. The boy had destroyed yet another of his IVs and had to have a new one put in. And just like last time, it was quite an ordeal for all of us. It took three sticks with the needle and nearly an hour of work to get his new IV in. So, that was probably the most difficult part of the day.

Today's good news was that since going back to straight breastmilk, Magnus has resumed doing very well with the bottle. An occupational therapist came to watch him feed this morning to make sure he wasn't aspirating or having any problems, and she said that he did just fine. Later, he took 40 ml from his bottle, which was a new record for him. So here's hoping he continues to make fast progress with the feeding.

Tweaking

So yesterday, Magnus continued to have issues with fast breathing and what seemed to me to be signs of GI problems (throwing up, and generating a poopy diaper every hour or so). So, this morning, we talked with his nurse practitioner, and she agreed to put him back on straight breastmilk, but she's putting him back on continuous feeds overnight so that he gets in enough calories. She also increased the dosage of one of his heart medications. They implemented those changes mid-morning, and by this afternoon, it seemed like one or both of these things was working. His breathing became more normal, and he was much less fussy than yesterday, and seemed to be on a much more normal pooping schedule. He also started taking milk from the bottle again, which he had basically stopped doing when he was getting the fortified stuff. So, hopefully, all that will continue to be the case.

Being on continuous feeds is a bit of a step backwards for him, but at this point, I am happy to do whatever will help him gain weight and get out of the hospital! This morning, I was thinking about how when Magnus first had his surgery, it seemed so scary that one day we would have to bring him home from the hospital and take care of him ourselves. Now it doesn't seem like any big deal, and I can't wait for us to get the hell out of there!

2 steps forward, 2 steps back

Magnus is still doing fine, but when I came in this morning, the nurse said that they'd been a little concerned that he was breathing faster than usual. They think this is due to one of two things: either the oral diuretic he has been taking for the past couple of days is less effective than the IV diuretic he used to be on, or he may be having reflux issues. Personally, I think it is the latter, and I suspect it may have something to do with the fact that until yesterday, he was just getting straight breastmilk, but then yesterday they started giving him breastmilk with human milk fortifier added to it to increase his calories.

I say this because when he was just getting breastmilk, he was steadily increasing his feeds with every meal and not throwing up at all and just spitting up minimally. Then, when they switched him, he started taking in much less milk orally and had a pretty good puke last night (he got his dad's shirt pretty good).

Anyway, for today, the plan is to switch him back to the IV diuretic, to give all his feeds through the NG tube, and to treat him with reflux medications. However, I'm hopeful that once he gets back to normal that we can try him on plain breastmilk again and see if that solves the problem.

It's disappointing, because originally we had talked about trying breastfeeding today, and because this probably also means another day or two in the hospital, but the important thing is that he's still doing fine, and luckily, I think the doctors were inclined to accept my suggestion that the fortified milk might be the problem.

Bottle feeding

Yet again, Magnus achieved all the goals his doctors set out for him today. He's now on all oral medications (though he does have one peripheral IV still in in case he needs it, but that's all!). He did just fine with bolus feeding. And he had his first two bottle feedings today!

As we'd hoped, he did really well with the bottle. The first bottle, they gave him 18 ml of milk, and he was able to drink 15 ml of that in 10 minutes. He only spit up minimally, and generally seemed to tolerate it well. For his second feeding, they gave him 20 minutes, and he was able to drink 25 ml. I think he could have done even better were it not for the fact that he really didn't sleep at all this afternoon, and then he JUST fell asleep before feeding time. But again, he tolerated it well, with minimal spitting-up. Right now they're going to keep him on continuous tube feeding at night just to make sure he continues to gain weight quickly, but he'll be doing 3 bottle feedings during each day. Hopefully tomorrow he'll do even better. The goal is for him to be able to take in 60 ml at each feeding.

Graduation

As of around 11 this morning, Magnus is no longer in intensive care for the first time in his life!

Since he no longer had his chest tubes, they decided to transfer him to the step-down unit this morning. Things are happening fast. They've been increasing his feeding rate every three hours, and the plan is still to try a bottle on him tomorrow. They told us that most kids who have this surgery do go home with an NG tube, but I am holding out hope that he might be able to feed well enough without one.

Magnus was also supposed to be switched from his high-flow nasal cannula (that blows air in his nose to help him breathe) to a low-flow cannula, but while we were waiting for the respiratory therapist to make the switch, he decided to just pull out his cannula on his own, and did fine with it, so he's just breathing room air now.

He's also getting transitioned off all of his IV meds and onto oral medications. They're hoping to have that all done by tomorrow, and then the only line he'll have left will be his NG tube.

And with all of this happening, they're even starting to talk about when he might go home. Someone said to us that maybe Wednesday might be the day, which would be kind of funny because that's his original due date, December 9th. We're thrilled that it looks like he'll be home soon, but of course it's also a bit daunting...not the least because this means we have to figure out how to install his carseat!

Fussy day

Magnus continues to make progress, but today was kind of a rough day for us. Maybe it's just that now he's getting food, he has the energy to be fussy, but he was super unhappy all morning, and was even fussing in his sleep! On top of being fussy to start with, he also had to have his IV line replaced this morning because he wiggled so much he ruined his old one. Unfortunately, that took a lot of poking and prodding followed by 2 tries with the needle (the first time they got it in, they realized it was in an artery and not a vein). Then we had to move rooms because someone else needed the one we were in.

Like I said, though, he is making progress, and he got his chest drainage tubes out this afternoon! He seemed to settle down a little after that, and I'm hopeful this will make for a happier Magnus in general, because all the nurses were saying that chest tubes are really uncomfortable to have in. They certainly don't look pleasant.

They also doubled his feeding rate this morning. He's still only at 4 cc's per hour, which is not much, but they're hoping to ramp him up to 18 cc's/hr by tomorrow. There's also been some talk about weaning him off his high-flow nasal cannula.

So, little by little, he's getting unplugged! I just hope he gets to enjoy it a little more now.

Food!

Magnus finally got food in his belly for the first time ever today! Unfortunately, it was through an NG tube, which he really did not enjoy having placed, but they want to start him out on slow continuous feeds to make sure he tolerates it OK. He's getting it very slowly, 2 cc's per hour, but I'm thrilled that he's finally getting to use some of the breastmilk I've been storing all this time! If he does OK with the continuous feeds, they're going to try him with a bottle on Friday, probably.

Magnus also got his intracardiac line out today, and will hopefully get his chest tubes out tomorrow.

I also got to hold him again for a while today, which was very exciting! We couldn't do chest-to-chest yet because he's still got his lines in, but it shouldn't be too long now.

Sorry my recent updates have been so cursory, but I have been spending almost all my time at the hospital, and when I'm home, I'm trying to squeeze in eating, sleeping and pumping, so not much time left over for blog posts!