One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Thursday, March 15, 2007

Preliminary results

I already knew that medicine is at least as much 'art' as 'science'. Probably more 'art' than 'science' really. And we are getting very regular reminders of that here with James. :*)

Everyone is still waiting on the finally report from the radiologist on yesterday's upper GI test. However, I am getting some feedback from most of the parties involved.

It looks like the contractions in James' stomache and duodenum (the part the stomach empties into, which empties into the small intestin) have stopped. Anything that gets into his stomach sits there until it fills up enough to start leaking out the stoma where his G-tube is or until gravity works together with some 'hopeful, unknown' event to cause the sphincter muscle in the exit of his stomach to open allowing the contents to drain down into his intestines. Then, they pass remarkably quickly through his intestines and into his colon.

It appears there is an area of intestine that is somehow bypassed, but this is unclear. It is also unclear as to why bile is leaking back up into his stomach.

At this point, we are intentionally draining the 'overflow' in James' stomach into a bag through his G-tube. There has actually been quite a lot of fluid. It is mostly greenish, though it is beginning to turn more yellow. In addition to draining, we are giving James two drugs to help counter this inaction in his stomach which we believe is caused by Vincristine, the most important and most commonly used of James' chemo drugs.

The current plan is to come of with some sort of chemical cocktail suited to James needs which includes drugs he needs to counter act the negatives of the vincristine.

To be really honest, this does not thrill me. It will be a little while before I can really push to look into some sort of 'options' (if there are any, they won't be readily apparent). James will need to have two more doses of the Vincristine this month and then probably at least one dose every month for the remainder of his treatment (which should run through about May 2010.

So far, the action we've taken (and he hasn't actually been on the new meds that long yet) haven't decreased the amount of leakage coming out around his tube site.

Suffice it to say that at this point, we don't have any real good answers. The oncology doc here is hopeful, but we have yet to really have the GI doc weigh in. As I type this, I see many things that bother me--it seems we are treating symptoms rather than looking for causes as we initially started out doing. Hopefully this will continue to a point. And it just doesn't seem right to have James enduring this kind of discomfort for three more years.

On an up note, we all slept great last night. We prayed for creativity to figure out how to block the light from James' roomates TV (which ran ALL night the night before). And we figured out that if we bunch up the excess of the privacy curtains in the right place, they do a pretty good job of cutting down the flashing light shining in our faces from the changing scenes on the TV screen (PTL). There is also interest at the nurse manager level in the events of our first day here, so I am trying to pull my thoughts together to share with her--probably this afternoon. At noon today, I am supposed to go learn how to take care of James' central line. His current day nurse did some research into caring for his G-tube site and came back with some gentler suggestions that I hope will help to make it less uncomfortable for James since we now have to clean it so often.

Vern and the children at home are working along getting things packed and sorting to take this to the dump and the Salvation Army. They are making good progress and have reserved a truck for the 22nd. The current plan is that after closing on Friday 23 March, at least some of us will head on out to Georgia. The prayer is that everything will miraculously come together so that all of us that move together.

I'm going to let you extract prayer requests out of this post today, so I can get back to James and Hannah and be sure not to miss the doctor's rounds.

Thanks so much for your thoughts, prayers, notes and wishes that you could do my city driving for me! I have finally figured out that if I delete something you send, but ask me not to post, I have a copy in my e-mail!! I hate to lose some of those notes with great stories and quotes and Scripture verses. Please feel free to keep them coming :*). (Ann, would you comment and send me your e-mail address please?)

Love to all, Stephanie... feeling much more at peace in the big hospital in the big city and willing to stay here as long as James needs to be, but looking forward to going home as soon as it is safe for James.

1 comment:

Joel and Molly said...

Hi Stephanie,

I was really hoping to see a new update on the blog today. I hope things are going well down there. Molly and I are praying for you. I can't imagine how hard this is on you to not only spend so much time away from Vern and your own bed, but to be doing it while caring for your sick little one.
We will continue to keep you and your family in our prayers.
Your brother and sister in Christ Jesus our Lord, Joel and Molly