As usual I’m tired. I don’t expect to post much other than a quick update. Liam had a couple of small seizures today. Neither lasting longer than a minute and he recovered from both of them on his own and without having to knock him out with meds. We will adjust his daily med doses with the neurologist tomorrow and hope that we can go longer next time between events. Unfortunately, seizures are just another thing that Liam’s mom and I have to manage. He will always have seizures but they can be well managed with meds. Problem is we don’t know that we need to adjust his meds until he shows us — by having a seizure. We are very lucky in both the frequency and severity of these events. I don’t mean to sound flippant or nonchalant about this but its just one more thing. Another item on our checklist of things to watch out for.
One of the other items on that list is Liam’s G-tube and Mic-Key button which he has had for about 7 months. The button is a small tube with a closure that is a few inches from his belly button that pushes into his stomach and is held in place by a liquid filled balloon. Picture the air nozzle on a beach ball just sticking out of my kid’s abdomen. It attaches his feeding tube and to be honest, makes late night feeding very easy. “Just set the feeding pump and walk away.” That’s right just like Ron Popeil says — “SET IT AND FORGET IT!” Well tonight I saw a slight rise in his heart rate for a minute or two and knew something was irritating him but not enough to wake him. Sure enough, the balloon holding his Mic-key button in had sprung a leak and he popped it out. It couldn’t have been out long because there wasn’t much formula on the blanket so I popped the old one back in to hold the tract and got a fresh button. New one went in fine and Liam didn’t even wake up! A bit of half digested formula aside neither of us were worse for wear and we didn’t even wake up mom. He is more bothered by a diaper change than he is when I push a big piece of plastic into his gut. This kid cracks me up.
He’s been sleeping through the night for us lately now that he can roll himself over to make himself comfortable so I think I’m going to hit the sack. “Sleep when the baby sleeps” they say but I doubt that they had the not so quiet sound of a ventilator by their head. Or pulse oximeters, or feeding pumps…the noise never.stops.
One quick note – in Liam’s first days I was writing a Carepage, a blog set up by the hospital. It was a wonderful way to give updates to our friends and families on his early progress and our first days as parents. As Liam got older and we spent more and more time at the hospital I slowed and eventually stopped posting. I wanted more freedom in design and functions and it was a closed invitation only site. Some of the pieces posted there I am still very proud of, and some of the comments left were very eloquent and meaningful to me. I would like to post some of them here and add some reflections on them given my new experiences and knowledge. They will be compiled into a certain category and will provide some back story to Liam’s long journey. I still haven’t yet decided one thing. Liam’s first birthday is the end of next month. It might be cool to post them on the year anniversary of their original posts. Each day that I posted there in 2009 I will post here in 2010. Might be fun no? Or I’ll just throw them up willy nilly whenever I feel like it. I’m not what you would call a patient man and so I’m betting on the latter but I think the idea is a good one.