Tuesday, July 05, 2005

Little T's latest hemo apt: His big head & G-tube

Little T's left arm continues to shrink and his hemangioma is now 6.5cm x 5cm. When he was born it was 24cm wide, not sure how long. He gained 200g to 7210g, gained .3 cm in length to 62.5 and his head shrank .5 cm to 45.5cm. Well not really. The .5 cm was probably measurement error. Even so, he's just above the 50th percentile for his head circumference. Everything else is still below the charts i.e. below the 3rd percentile, so yes, my boy has a big head.

We talked about removing his Broviac and putting in a G-Tube at the same. Both procedures are supposed to be low-risk and the highest risk is the anesthesia. He's had various adverse reactions to anesthesia including high blood pressure, rapid breathing and it seems to make his throat sore. Once he almost had to spend the night in the recovery room.

It's a little earlier for the G-tube than we'd like. We were hoping to give him a chance to eat more on his own and perhaps get rid of any feeding tubes. But he hasn't had any chemo since June 8th, so he's running out of medical reasons not to eat except for his NG tube. It's still a tough decision. We'll see if they can schedule both at the same time. If they can't, I'll take it as a reason not to put in the G-tube.

As I drove there, I remembered the words of the counselor I had years ago when I first discovered I was molested at age 7 by a next-door neighbor. She said that I was hard on myself; that I should talk to myself like a friend. If a friend came to me and described the situation I was in, I wouldn't tell her it was in the past, so she should just get over it. So I've been talking to myself as a friend. It helps.

When Little T had sepsis, the right thing didn't happen at first. But we kept taking him back, kept asking for help and eventually Little T got what he needed. "We've been through the worst of it" is not steady ground. I don't know what might lie ahead. What I do know is that I have gotten through somehow and I am a survivor. This Indigo girls song keeps running through my head: "The less I seek my source for some definitive, the closer I am to fine."


Jenny said...

That's great his arm is going down so much!

Craig's brother, Mark (the oncology nurse of 15+ years), says that G-tubes are tolerated really well, and often preferable to NG tubes. They're more discrete, probably harder to rip out, and aren't as physically bothersome.

Thida said...

That's just the sort of thing I wanted to hear. Thanks Jenny! Let's hope it all works out well.