(Colby is like an entertainment center when we take him out with tons of wires handing off the back of him. The white tube going into Colby's right thigh is the broviac line that I'll talk a bit about in his blog today.) (I often just hold his hand and rub his head when he's sleeping.)
( Nine out of time times I end up going to the hospital from my last appointment. So I just take off the tie and roll up the sleeves. I usually take a couple minutes and talk to Colby, ask him how his day was, tell him how good he looks and update him of all the people supporting him. Ow....and I talk to him about his blog. hehe. He's a star!!!!)
I took a day off yesterday. Well, I still worked but it was a day off from the hospital, from the blog and I just tried to get some much needed rest. Tracey was working and Evan is at his dad's, so I had the house to myself. I had won tickets to go see Dave Matthews over in New York for a show he was doing last night, but with everything going on, it just wasn't feasible for me to make it. The show was broadcast on the internet. I spent last night, just Hamilton and I, watching the show (yeah, I've turned our dog into a Dave fan too...he just doesn't know it), having some wine and playing the guitar. Good stuff. And today I feel a little better.
Thank you all for your comments. I'm simply amazed at how many people read about our family and don't really know what to say other than "thank you"! I've said it before but it's so true, that Tracey and I wanted so badly to make some good out of this situation and based on your comments, I feel that it's been a success. And then to see that people are from all over the just blows me away. I think my next poll will be how you heard about the blog.
Lorna, thank you for your e-mail and I think you're right. I really didn't have a chance to process things when Avery passed away. I was still all wrapped up with Colby's situation which at the time was day by day. Now that Colby seems to be doing better, I'm starting to think more about Avery again. That makes perfect sense.
Tracey went to see Colby yesterday. He was doing very well. He drank most of his milk from his bottle and was very alert. He gained another couple ounces which puts him up to 4 pounds 3 ounces.
One thing I have yet to do is to change a poopy diaper. Thus far, he's pooped when we're not there. So that will be an interesting day. I'm sure that after a couple times it will be like old business. But it's like the first time giving him a bath, or taking him out or whatever, I'm just not sure how to go about it. So that will be an interesting blog to write for sure.
When I look back, even just a month ago, it shocks me how much things have changed.....and for the better. There is less and less to report on regarding our little boy. He's stabilizing and that's wonderful. It's simply more of a growth thing now. I love taking pictures of him and sharing them so that's always something I can post. One thing he'll have coming up with again may set him back a little is that he has to have his broviac line removed. This is the thick tube that is placed in this thigh and goes up into his body. It's used as a more stable way to deliver medication than IV's. It's surgically put in and as I understand it, there is a but if a cuff just below his skin which helped keep the line in place. By now, that cuff probably has some tissue which has grown in around it. So when they take it out, they'll probably put him under again. I need to find out more about that and then find out when they think they'll tackle taking it out.
Apart from that, barring any drastic changes in Colby's situation, our main goals at this point are to get him eating from the bottle as much as possible. To pack on some pounds. And eventually to try to ween him off the cannula. People still ask me when he's coming home and we simply don't have an answer. He has much to overcome yet and it's not a linear progression, so we'll take it one hurdle at a time. As the day nears, we'll certainly let everyone know!
Anyway, that's the scoop. I'm anxious to go spend some time with him today. I need to get into the office for a bit then have an appointment at 2pm. But I'm headed to the hospital from there.
P.S.....if the new slideshow messes with you being able to view the blog correctly or with the loading the page, please let me know and I'll take it off.