Wednesday, July 18, 2007

Epilogue

Alasdair came home yesterday. We're beginning to resume a bit of normality around here:

a. Alasdair: cranky; pees on everything.
b. Maeve: into the Vaseline. Vaseline on her toys, on her clothes, in her hair.
c. Michaela: sassy, not eating her vegetables.
d. Jess: stressed. (see items a, b, c)
e. Me: glued to the Tour de France

Normal.

I took a little movie of Alasdair during some quiet alert time yesterday. It's action packed. You can hear Phil Liggett going on about Alexandre Vinokourov (see item e above), Jess talking to her Grandmother and Michaela smearing fingerprints on the lens.

I can't say this enough, thanks everyone for all your love and support. This will likely be the final post here, but hopefully Michaela and I see will many of you at GLW this weekend.

Bye for now.


Monday, July 16, 2007

Ha Ha Just Kidding Thanks

Alasdair didn't gain any weight yesterday. So they're not gonna let him go. He has to stay at least another day. Hopefully he hits the chow hard today and gets some more meat on those bones.

I think we are all ready to be done with all this.

Sunday, July 15, 2007

Denouement


Alasdair's ordeal is finally coming to a close. He is eating well, eating regularly and gaining weight. He's even decided it's time to join the fight against AIDS.

Just before the girls and I arrived for a visit yesterday he had his PICC line removed. At this point he is not hooked up to or tethered by any machines or sensors or anything. Finally.

Jess is coming home here in a little bit after a late feeding, leaving AH in the care of the nursing staff for the night. She's going to get Michaela and Maeve off to a sitter in the morning (Thanks Tina!) while I head to work again. Then she'll head back down to Children's and begin muddling through the extensive discharge procedures and bidding them farewell. Ideally we never have reason to set foot there again. The whole family should be together at home again when I return tomorrow evening.

Thank you again, everyone, for all your support during this. It has been a very trying three weeks but it's also been tremendous receiving all the love, support and offers of help that have flooded in.

There are a bunch more pictures on the web album.

Friday, July 13, 2007

Can't Trust the Grandparents

Alasdair is proving to be a finicky little kid. It's always two-steps-forward, one-step-back with him. He was beginning to feed well when I last posted, but, mind you, the initial amounts were very small. He was only expected to consume 5-10ml (less than half an oz.) at a time. Which he could do just fine. But when we needed him to graduate to larger amounts he just wasn't having it. He would resist and resist. Mom would have these hour long feeding sessions that just go nowhere and leave everyone frustrated.

So the doc orders a feeding tube (lame). It's basically the same NG tube he had in his nose before, sucking out the green bile from his belly, but this one works in reverse. It's fed through his nose, some milk is poured into a funnel at the top and left to drain right down into his stomach. I wish that we didn't have to employ the tube, it did the trick though. They only used the tube once or twice on overnight feedings Wed. Maybe he just needed to give his stomach a stretch? Subsequent feedings have been going much better. He's nursing about 50-60ml with Jess now and then finishing the last 20 or so that he needs with a bottle.

They have stopped all the nutrition he was getting from his PICC, it's still in place but not being used. If he continues at this rate we may be able to take him home tomorrow! Hizzah!

In other family news, Kelly and I took Michaela on her first sailing trip last night. We just went on a short jaunt around Port Gardner Bay. We had a great time. We grilled some rainbow trout and corn on the on board grill and had a wonderful dinner. Michaela had a chance to man the tiller for a bit and was having great time just clambering all over and around the vessel. It was also a bit of a milestone for Kelly too, he sailed all the way into his slip in the marina (ie, the motor was off)! Single-handedly too, I was up at the bow manning some lines and he did all the tilling and tacking through the marina on his own. Not to shabby.

Meanwhile, Maeve was getting mauled by a dog. I left her with my parents for the evening, they are watching Tracy and Ralph, Steve and Rina's shaggy dachshunds while they are in Japan. Ralph gets over excited around children and he ran right at Maeve, barking up a storm, and scratched her face, right on her eye. Poor thing. She was upset, but not as much as you might expect. It doesn't seem to be bothering now at any rate. Doesn't look pretty though. Poor thing.

Tuesday, July 10, 2007

Bullseye!

Daily rounds are interesting.

Strangely the general surgery wing that Alasdair is in now is much better about sticking to the rounds schedule than the NICU staff is. Rounds are supposed to take place between 7 & 8am in both areas, and they usually do with our current staff but they often didn't reach our bed until the 9 to 10am hour when we were in the NICU.

They're pretty much the same deal everywhere though. A team of doctors, nurses, therapists and administrators - usually about 6 to 8 strong - walk around and run down the status of each patient. Parents are always invited to sit on rounds so that we can hear what they're saying about our kids. They usually pick one of the most awkward doctors to do most of the speaking (I'm sure it a low-man-on-the-totem sort of lottery) and they tediously list of a whole range of things that I don't understand: his various levels of potassium this or magnesium that, the various potions and tinctures they're administering via i.v., if this or that was detected in his blood or stool, whatever. Some attendees take notes, others don't. Some are obviously checked out and not paying the slightest attention, others are ready to correct any mistakes of the part of Doc Awk. Everybody periodically makes eye contact with the parent(s) and makes one of those 'frown-smiles' or winks or something to make sure we're feeling comfortable and included.

Then at the end they always ask the parents if they have any questions, but we never do. I mean, I've got a fair medical vocabulary. My mother's an RN and my dad's a research scientist with a phd. And I try to absorb this stuff whenever I can. But everything is covered so fast and not just in medical jargon, but in abbreviated med jarg. Even if I might know what some of the substances are that they are referring to are, they have their own little code for each thing that it's mostly undecipherable. I'm not offended or upset that I don't get to understand. Almost the opposite. I enjoy sitting in and watching, but it's certainly merely observational for me. I wouldn't even know where to begin with questions. If I had any they would be about Everything. Sometimes there might be something that I'll want a definition of or something but I generally just save them for when I can just ask one of the nurses.

Anyhow- during today's rounds, they peeked into his diaper and were pleased to see some stool. The diaper needed changing though so the doctor decided to help out.

Then Alasdair struck!

"I try to be nice and change a diaper and I get pissed on," he says.

Sweet. It got all up and down the front of his name-embroidered white coat. I'm sure he's got a million of em too, but the episode was hilarious nonetheless.

Alasdair is continuing to recover well and is feeding very well. He started on breast milk last night overnight and has been very successful with it. He's keeping everything down and eating more and more all the time. Today he started actually breast feeding is is doing relatively well with that too. Despite the somewhat late start it doesn't seem that he has any lingering issues there. His gatorade and lipids intake has been scaled back to about 1tsp/hr, significantly less than before. They may drop them altogether in the next day or so and even remove his PICC line. He did trade in his big i.v. tower for a much smaller one, so it's easier to take him for a walk around the floor now. He weighs 4100 grams, or just about 9 lbs. At this rate we may be able to take him home before the weekend is through!

Monday, July 9, 2007

Flowing Downstream




Alasdair's favorite pastime used to be pacifier sucking. He was getting pretty good at it too. Did it pretty much every waking moment. And if he wasn't sucking he often got upset.

But ever since his surgery he has completely lost interest. He wasn't really interested in much of anything. But that was before the pooping!

He pooped a couple more times yesterday; while I was there visiting in the afternoon he had one really big one. It was loaded with all that green gunk that had been coming up in the wrong direction before. An excellent sign that his plumbing was finally in working order. And Jess reports that last night after I left he was rooting for his pacifier again and happily sucking away. Hizzah! We'll likely be able to try the pedialyte again today with greater success.

He's also awake and content a lot more often; enough that they've reduced his morphine to 5mcg/kg/hr. He's finished with his antibiotics and I think they have removed the last i.v. in his arm. All he has left is his PICC line which will still stay with him for a while. We finally gave him a bath yesterday too; his first since his second day of life back at Providence.

I've included a few pics again here today, and a few more new ones are available on his web album. The first is a pretty good one of the boy in 'quite alert' mode. Happily, something that we're seeing often now. Jess took the next one, a good one of me and Alasdair together.

And the last one is one of the many psychedelic African animals that appear throughout the Giraffe Wing at Children's. This hippo is right outside one of the main entrances. I think it's supposed to look like it's submerged in water but the illusion is totally lost on me. It just looks like it had it's legs amputated. It gives me the willies.

Saturday, July 7, 2007

Scooby what?

So they put a band aid on Alasdair's bottom. Right there between the cheeks. It's Scooby Doo. There's so many ways that's funny.

I just had way too many choices for this post's title - I don't even think I chose the best one. If you can come with something better, add it to the comments. I was trying to work in Scoob's little brown nephew, Scrappy, but couldn't come with anything really, uh, juicy.

- Sorry, Alasdair, I don't mean to be having so much fun at your expense.

I'm not really sure what the point of the band aid is. I mean, he's wearing a diaper which is kind of like a giant band aid anyhow. Shouldn't it absorb anything coming out better than the bandage would?

Recovery continues slowly. After yesterday's dramatic post his condition continued to improve. He didn't want to move much, rather he preferred to rest. But his color was better and he was sleeping peacefully most of the time. His heart rate was also staying much closer to his normal 160bpm or so too.

Jess is staying with him now, and today they attempted to feed him some Pedialyte orally. For the uninitiated and the non-parents, Pedialyte is essentially baby-gatorade. Alasdair was not interested though, he rejected it outright. Now that they have removed the NG tube from his nose he's also been vomiting up a little of that green gunk again. Looks like his bowels have a bit more healing to do yet.

The plan though, is to get to down some Pedialyte and show that he can handle that. Once that hurdle is crossed they'll start him on milk and then he can hopefully begin feeding quite normally soon thereafter. We'll try again with the Pedialyte tomorrow and see how it goes. His stomach is growling and gurgling, it certainly anxious to get started, it's just the mixup further downstairs that needs to catch up. Also, if his incision still looks good tomorrow they will pull him from his antibiotic regimen and yank his catheter.

He pooped again today too!

I took the girls to the petting zoo at Forest Park today. Michaela needs to get out here more, she didn't correctly identify any of the animals except the rabbits. She thought the goats were cows, or dogs. She thought the cows were goats, or pigs. She thought the chickens were turkeys. She thought the geese were swans. sheesh, I swear we had all this down pat like, three years ago. And Maeve was terrified of all of them, even the rabbits.