Sorry it's been so long!

I've just totally forgotten about blogging this past week and change (oops!), but you haven't missed out on much. When I left off, we had just begun dealing with Brandt's heart failure via medication. We've been taking him down a notch (.1mcg/kg/hr, if you care) every other day, weaning veeerrry slowly so we don't end up with a reaction like we had last time. We started out at .5, got down to .1 on Saturday, and today is the big day...we're going to turn it off! This is apparently one of the hardest steps, so he may have to go back on to a low dose, but the hope is that he'll handle it like a champ, just like he has everything else.

If he seems to tolerate it well, they'll keep him under observation in the ICU for another 24-48 hours, then send us down to the floor. We'll stay there for a week (maybe less if he does exceptionally well), and then stick around town for another week before we head home. Milrinone has a very long half life, so it takes a long time to clear out of the system, and a person can develop new symptoms of heart failure up to two or three weeks from the time they were taken off of it; hence the reason they want us to stick around for a while.

But so far, the wean has gone very smoothly. He's eating a ton, flirting with the nurses, kicking and flailing around, and being his normal happy self. I love having the real him back. When they brought him back from surgery, swollen and miserable and low-energy, it felt like they had replaced my child with a totally different one. There was nothing familiar about him. But as layer after layer of medical intervention has been peeled away, I've seen more and more of the kid that I've known since January.

It is kind of interesting how much the mother/baby system has to change in a hospital setting. At home, Brandt is my child. I know when and how much to feed him, when he needs his naps, how to calm him when he cries and (usually) why he's crying in the first place. But in the hospital, I'm more of a sidelined figure, and he belongs to the hospital staff that's in charge of his care. After surgery, everything about him changed. He didn't have an appetite, which was so far beyond his norm that it threw me for a loop. But the nurses knew that the medications and pain were causing it, and they could fix that. He was tired for a week, and slept more than he was awake. Again, it was beyond me to figure out, but the nurses knew it was to be expected and just rolled with it. When he cries, it isn't just because he's hungry or tired anymore. Maybe his head hurts, or he just doesn't feel good because he's having withdrawals or can't get enough oxygen into his system. Once more, the nurses can fix that, but I can't.

Our first time here, I spent a lot of time and energy being crushed by the fact that these nurses knew my child better than I did. This time, I've come to realize that it's just another part of life with a CHD kiddo. It'll get better as he gets older and can tell me what's wrong, but for now, I have to rely on the nurses to do the troubleshooting for a child that can't verbalize his discomfort. Now that Brandt is feeling better, I'm gaining more of an important role again. He's my kid again!

On another, less heavy note, I've spent the last few days with Tanner and Wade! We worked out a flight arrangement through Angel Flights, mostly thanks to one pilot in particular, who was so determined to make it happen that he nearly paid for their tickets over here when it looked like we weren't going to be able to find a second pilot! It is such a neat organization, put together for families like ours that have had something like this sprung at them. Buying multiple plane tickets a month doesn't really fit into the average budget, so that's where they come in. They'll give each qualifying family two round trip flights per year, either via Alaska Airlines, who donates a set number of tickets to them, or through private pilots who donate their time, aircrafts, and fuel. Last trip, they flew Tanner commercially because we weren't able to give them enough time to arrange a pilot, but this time, they were flown in two tiny little airplanes, courtesy of a couple pilots that volunteered themselves to the task.

But I digress.

I didn't realize I had missed Wade as much as I did, but every single thing he does is cute, lately. Even the things that would have made me crazy before I left, like his non-stop chatter (holy cow, his vocabulary is expanding!), parrot-like tendencies, and super early wake-times. For now, I've just been soaking him in. He's such a cool kid, and it's a ton of fun to watch him with Brandt again. He's an awesome big brother.

Tanner has to fly back tomorrow morning (why does work have to be so high-priority?), but Wade and I are enjoying him in the meantime. Mom is driving out today, and will be here with me tomorrow so I can spend some time with Wade and still have someone to sit with Brandt during the day. I've got some big plans for this kiddo, especially since the hospital has such things as free zoo and aquarium tickets, and there's a pretty cool children's/science museum in the vicinity as well! It's an added bonus that he gets to ride the light rail to each of them, although his favorite part of that particular experience is the "movin' 'tairs". Apparently escalators are pretty neat to a two-year-old!