Well it’s just about 2am and Liam is finally asleep. I should probably try to grab a nap while he does but it usually doesn’t work out that way so I’ll bang out a quick update and maybe an episode or two of futurama on Netflix before Karin comes down from the bedroom for our nightly switch-off. That’s if Liam decides to stay asleep and if the last couple of nights are any indication he’ll be waking up ready to play in about an hour.
We’ll see how this goes.
Karin, Liam and I spent last Wednesday up in Boston for Karin’s birthday. I’ll say it was for her birthday but really it was because Liam had an appointment with one of his eye doctors at Boston Children’s. Had to go through all the effort to get up there anyway, so we figured that after the appointment we’d make a day of it and hit the aquarium. Good idea right?
We thought so too.
The appointment went very well. Liam was exceptionally well-behaved in spite of all the different tests and adjustments. His vision has improved since the last exam but is still severely compromised. A fully detached retina is gonna do that. The damage to his other retina has not gotten worse and the retina damage associated with Sabril’s use for infantile spasms hasn’t taken hold yet. A good thing considering we are in the middle of a long-term wean off of Sabril anyway and so it’s less of a concern moving forward. Yay! You know, one less thing to worry about.
After spending almost 2 hours in the car and a total of four hours in the hospital Karin and I should have known that Liam’s tolerance for his car seat and his wheelchair would be wearing too thin for a trip to the aquarium but nothing ventured, nothing gained we headed across town to see penguins and sharks. During the week of July 4th.
I’m not sure how many people visit Boston from around the world on any given summer week but on Wednesday July 6th every single one of them made their way to the aquarium. Crowded isn’t even the word. I have no idea why we didn’t anticipate this going in. Oh wait a minute, I’m pretty sure it’s because I’m an idiot.
Whenever we leave the house for any length of time the main focus is how many hours of life on his ventilator battery or suction rig, how many hours of oxygen are left in his tank but generally those concerns become irrelevant once we get out into the world. In making sure that we’ve planned for every scenario we find that the problems end up stemming from “plain”, “normal”, “typical” kid stuff. Dirty diapers, crankiness, and hunger. It doesn’t get much more “normal” than that, now does it?
But anyway, for all of his exhaustion and fussiness he wasn’t half as cranky as I was as we battled through the crowd to try to get a glimpse of octopi and manta ray. It didn’t take long for Karin and I to decide to cut our losses and head for home. Knowing it was going to be a couple more hours in the car we probably left at just the right time. We managed to avoid any big seizures on the road, though he did have a big one in the eye doctor’s office and if I remember correctly another one just as we got back to the house.
We learned a lot that day about what Liam would tolerate and what I would tolerate. Perhaps if we were heading to somewhere a bit less hectic than downtown Boston our approach would have been more laid back and we would have stayed out for more adventures but the day was a win either way as Liam may have gotten cranky he still kept his cool through it all. It was Daddy that we all had to worry about. I love mankind. I just hate people. All of them.
Word is spreading throughout the hospital and I’ve been approached by two more committees to give my presentation about Liam and our time in the NICU. Rather than the more casual “chat” I participated in last time these meetings are more formal and time sensitive. I have a lot of work in front of me condensing the story into a more structured “speech” but I’m excited for the opportunity to give my perspective on long hospital stays, their effect on families, and what hospitals can do to help treat the whole family during a child’s stay.
I had intended on getting a few more little updates crammed into this post but Liam seems to be out for the night, I’m running out of steam, and I just noticed that Star Trek II The Wrath of Kahn is streaming instantly on Netflix. Do I really need to say more than that?