We've just gotten back and settled from visiting Gaines tonight. All of his stats are about the same. Carbon dioxide is still in the 60s (but his ph is still compensating for it), oxygen is still around 32% (that might be a smidge higher) and he seems to be doing well with his temperature. I believe that he is up to 32 ccs (just over one ounce) of food every three hours but at his last few feedings he's had about 5-6 ccs of residual (undigested food). The doctors don't seem concerned about it so I'm not going to be either.
Tonight they plan to remove his PIC line. This is the line that he has been fed his TPN (nutrients in addition to food) through. They no longer feel that he needs the TPN since he's tolerating his feedings so well. This is exciting because it is just one less thing for him to be hooked up to. He'll be given a round of antibiotics before they remove they remove the line. I believe its to avoid any possible infection.
Gaines had his eyes open more tonight than I've ever seen. It was so nice to see him looking around. He seemed pretty alert. I know that he can't really see me but I felt like he was looking right at me and thinking, what is going on mom?...get me out of here. I want to so badly.
I've really been having a hard time with this oxygen business. Not a hard time like I had the first week or two of this (side note...I think having Reed here has REALLY helped my spirits), but I just ache for him to need less oxygen. I want him to get off the oxygen and CPAP more than I can say. I try and just be thankful for the progress thus far but it's hard not to want to take the next step towards going home.
Even though Reed is here now, I still cannot wait to go home. There are so many things about home that I miss. According to my count, today is day 60 for me. I left home 60 days ago thinking I was going on a 3 night work trip. Funny how plans change. Actually its not funny...maybe it's interesting or something but its definitely not funny.
On a lighter note, my friend has been here today and I've so enjoyed her visit. We walked around Georgetown and I got to pretend like life was normal for a while. I finally let myself buy a couple of little things for Gaines. Just some footed sleepers that he'll need...nothing major but it was fun to look at tiny baby clothes.
Reed is still doing great. He has mastered telling us when he wants more of something. Someone has obviously taught him sign language for more. We have no idea where it came from but if he asks for "mo" and we don't accommodate him fast enough, he bangs his fists together at us, like maybe you'll understand this. The things he does these days are just amazing.
I'll go for now. Please continue to keep Gaines in your prayers. He is such a precious child and a huge blessing to us. I can't even begin to tell you how much we already love him.
Love to all,