Hmmm, where do I begin? The last day or so feel as if they could have been a week. Just a lot going on. I guess we'll go in chronological order.
I spent last night at home while Tracey stayed in the hospital with Colby. Neither of us slept well. I just kept tossing and turning and Tracey was kept up with Colby. He's been very fussy and hasn't been eating well. CCMC uses a different milk additive and it seems to be giving Colby a hard time with his belly. He'll cry when it comes time to eat, but then when he does eat, it's sporadic and at times he just won't take the bottle at all. He was eating about 60-80 cc's of milk each feeding.
Thus far today, he took 55 cc's at 9am and then I just fed him around 1pm and he only took 45 cc's. You can tell it's his belly though because he keeps bearing down like he's trying to poop but nothings happening. Sometimes he'll push and then all of the sudden just start crying uncontrollably. And as quickly as it starts, it passes and he goes to sleep. Tracey got some of the old additive and we're going to use that until it's gone. Colby couldn't eat after 4am. And when Colby's hungry, EVERYONE knows about it! So around 8:30am the surgeon came in to talk with Tracey. While at UCONN, he was talking about doing a shunt. But the plan changed this morning and he did a spinal tap instead. This is when they go into the lower spine and withdraw spinal fluid. The fluid in your ventricles connects to your spine and it circulates throughout. So the thought is to take some fluid from the spine, then wait until Wednesday when they will do another ultrasound or MRI and see if the pressure is relieved or if his condition has gone right back to where it was before they took fluid out. The surgeon said that they were able to withdraw quite a bit....although now I don't remember just how much. You you can tell the difference in Colby's head when you feel it and I even thing you can see a little change in the front on his head. If, come Wednesday Colby's condition seems to be the same as it is now, in other words if after they drew out the extra fluid, his ventricles didn't fill up again, we may be looking at coming home around Thursday. Or, they may want to keep him longer to watch over him.....or they may try other procedures or a shunt. We're still in the fact-gathering stage of all of this.
It's difficult being transferred to a new hospital because they do things differently, they don't have all the records yet, don't know Colby, use different medications and milk additives. But each day that goes by they'll get to know him and we'll get to understand how they do things.
It's funny because it doesn't feel at all like Christmas. Tracey and I aren't exchanging so we each brought Evan to let him get stuff for us. Then we obviously got Evan gifts. I wrapped his and Tracey's things this morning before coming into the hospital. Tracey is out trying to do some last minute shopping now. But that's about all the shopping we've done thus far. They have a Santa that comes around the hospital and I guess they take the kid's picture with him. When I arrived today, there was a little toy for Colby and a Polaroid of Santa standing in Colby's doorway with the toy....I guess he came while Colby was in the operating room. Sorry Colby....you missed Santa this year. : (
The hospital we're in now is a Childrens Hospital. It's all brightly colored with paintings of animals on the walls, play rooms and other kid-related stuff. It's interesting because you see all kinds of children here, from infants being carried by nurses or pulled in little red wagons, to teenagers walking the halls with IV's being pulled behind them. The floor we're on is for noninfectious conditions. So they're are children battling cancer and other infants. I continue to be amazed at how this experience puts things in perspective. Just when you start to think "Man, this sucks!" just look down the hall.....those kids may never make it out of here. Colby is here to do some good, to make him better. It certainly puts things in a different light.
I can imagine not many people will be checking the blog over the next day or so as it's the holiday. And that's really a good thing. I hope everyone is enjoying their time with friends and family because that's what makes the holidays so special! I will most likely be posting more frequent updates on the blog as I'm here in the room with Colby....and wireless internet.